Answer to Prayers

So this month, Nathan has seen a few doctors, and it's been a little while since he has. He first saw his pediatrician, and he noticed that Nathan's ear tubes were no longer in place, and that there was a little fluid building in one ear. I wasn't that concerned because he seems to be hearing and speaking fine, and even hoped that he wouldn't need any more ear tubes at this point, since he's already had two placed.

Then two days later, he had a hearing test, and again, the audiologist noticed fluid. Again, I didn't seem concerned, until she took us to the little hearing test room with the big speakers that light up. Nathan sat on my lap and as he heard the sounds and saw the lights, he would turn from side to side like he always does. But then she lowered the volume, and I sat there as my little boy wouldn't even flinch while the lower sounds were played over the speakers, and I could hear them clear as day. Throughout the remainder of the test, he would not turn for those sounds, and I knew we weren't done with ear tubes just yet. The audiologist confirmed that he did not pass his test. I told her we were meeting with his ENT (ear, nose, throat) doctor the next week, so she was happy to hear that.

So this past Wednesday, I returned to the same medical office, this time for the ENT. I waited 90 minutes before I was finally seen by the doctor, which is not easy to do with Nathan who is a mile a minute kid, getting into everything around him. She took one look in his ears and knew he would need more tubes placed. I asked why his tubes keep coming out; after all, he just had some placed in April. She couldn't explain it, but only tell me that all kids have different outcomes with tubes, and that this time, she would be putting in "sturdier" tubes called T-tubes to see if they would hold up longer.

The other concern had to do with Nathan's health insurance, which will expire at the end of December. The new insurance for January is going to have much higher copays, not to mention a wait for all the referrals and authorizations to go through, so we had been praying that there would be a chance that Nathan could have his ear tube surgery before the end of December. I asked her if that was possible, and she told me to talk with the surgery scheduler before I left.

So I went back out into the waiting room for a bit, and by this time I had been at this place for almost 2 1/2 hours! Nathan was worn out and fussy. I got called back in, and asked if we could schedule the surgery for the 30th, and she said yes, but that I would still need to see the anesthesiologist before the surgery. So she looked for an appointment for the pre-anesthesia, and it turned out they had an opening the same day at 1:15, just down the road. I took it, glad that I wouldn't have to try squeezing in an appointment right before Christmas. So Nathan and I went to get some lunch, he took a nap, and we headed in to our second appointment of the day. By this time, Nathan was super cranky. There are a number of steps you have to go through at this appointment, so it was another long one. But we got through it, just in time to get home to pick up the kids from school. Talk about a long day with a toddler.

But our prayers were answered, and we now get to avoid a large copay. Nathan's health issues sure keep us busy, and me very tired, but I am so blessed to have great doctors relatively close by that can help with his different needs.

Nathan's 2nd Birthday

Nathan turned 2 today! The time has gone so fast with him, maybe because it has been a busy two years. And it's not slowing down a bit, now that he's in his little early start class three days a week, speech one day a week, which leaves Fridays for us, and I'm glad his birthday was on a Friday. His language has really picked up in the last couple of months. On Wednesday, his speech therapist did an evaluation, and I was shocked at how many pictures he could identify with words. He is well beyond the 2-year-old speech level, but still has trouble with some articulation, so he will continue speech therapy.

Here are some cute things I want to remember about him at this age:

-He is the only kid of mine to adopt a blanket and stuffed animal (his "goggie") as security objects, and cannot sleep without them.

-He loves the show Curious George, and asks for "Monkey" or "Gorge" (not misspelled, that's how he says it) all the time. He also likes Daniel Tiger's Neighborhood and the Wiggles.

-Before he can go to bed each night, he runs to Joel and says, "Moon!" because it's now their little ritual where he will take Nathan out there and look for the moon. Nathan is always very excited to find it.

-The other night, I wanted to give him a kiss on the cheek, and I said, "Kiss!" and instead of letting me kiss his cheek, he grabbed my face and made me kiss his lips. I'm not much of a kiss my kids on the lips mom, but it was so cute I had to do it.

-He throws tantrums about things when I take him grocery shopping. The other day, we were in line buying diapers and wipes, and the person in front of us had a big bag of apples. He saw them and screamed "Apples!" at the top of his lungs until we got to the car. He actually did this one other time at a different store for bananas. I need to be on the lookout for what people put on the conveyor belt!

-Earlier this week, it rained for the first time in a while, so I taught him the word rain, and while we were in the car, he thought it was so neat to watch the rain fall and see the windshield wipers. Later that night while putting him to bed, he suddenly said to me, "raining" and pointed to the ceiling and said "water, sky." He picks up on things really quickly.

-Today we've been practicing his age. When I ask how old he is, he says, "Do!" and tries to hold up two fingers.

He can really be a handful most of the time, but I'm glad he has spunk and personality, and a whole lot of determination. He always knows what he wants, and will do whatever he can to get it. We're so happy we have Nathan in our family!

"The Talk" with Blake

So tonight was pretty monumental. I had "the talk" with Blake. Where I get into more detailed specifics of why Julianna acts the way she does. More than just saying, "She's just a little different, that's all," which is what I usually say when she does things that are not like other kids. So yes, I told him his sister has autism, and tears were shed, and I think he feels much better, and so do I.

It all happened when they were going up to bed. Blake was already brushing his teeth, and Julianna went up after her. It's always a huge effort to get her up those stairs, and for some reason, when she did get up, she threw herself to the ground, and did what Blake thought was a huge no-no: bite her hands. We've been through that stage, we've celebrated her "graduation" from the hand-biting stage, and she knows it's something she should never do again without certain consequences. So when Blake calls down the stairs to me, toothbrush in mouth, "Mom, Julianna is biting," it sends her into a complete meltdown, which of course sends me into a complete rage (hey, it's the end of the day...not much patience left.) And I was mean to Blake, because I was mad that Julianna had a meltdown, and might wake Nathan, who is not going to sleep very easily these days, and I marched up those stairs and told him to go to bed, and he ran there, and started sobbing. So while he's sobbing, I go back to Julianna and she tells me that she wasn't biting, and she needed to hear Blake say this to her in order to be okay. So I demanded that Blake say "You weren't biting" to Julianna, and he does, very grudgingly.

And by this time, I am so worked up, but Blake is still curled up in his bed, crying. He doesn't do this often. And the thought came to me, you know, Blake has to put up with a lot in this house. Much more than I give him credit for. I knew instantly that I needed to talk to him in more depth about his big sister. So I went in, and I asked why he was crying, and after calming down he said it was because I was mean to him. I apologized, and told that I was mean not because he did something wrong, but that it made Julianna tantrum. So we started talking about why she still throws tantrums at almost 11 years old, and I asked him if he had ever heard of autism. He shook his head no, and I described it to him like this:

There are lots of kids in the world right now who have autism, and doctors aren't really sure why, or how to cure it. These kids have trouble making friends or talking to people, they have trouble learning in school and at home, and they have trouble with their body's senses. I told him that even though a test on Julianna's brain showed nothing was wrong, she still has trouble with her nervous system. He didn't know what that was, so I described it like a freeway, with cars going at relatively the same speed, in the same direction, exiting here and there, but flowing smoothly to their destination. Kids with autism have a freeway with traffic jams and fender benders, so certain messages don't always get sent to the brain the way other people's nervous systems would. He understood this. This led to him talking about how he's nervous to drive a car, and that he wants a car with flames painted on the side. But I am still positive he understood.

I told him that we don't know why Julianna is the way she is, but all we have to do is try to make her happy, and love her the best way we can. So when we say something that makes her mad, we now know not to do that again. And that's all we can do. I told him he's being such a good brother to her, and that Julianna is lucky to have him. And he really is amazing. Sure, he gets upset when she demands that he answer a question or follows him around everywhere, but for the most part, he likes to play with her, and they have a lot of fun.

I feel very blessed to have a son like Blake. I know that what he is learning by being a brother to Julianna will serve him well in his life. What a journey it is raising children. I feel fortunate to have the words to say when I need them, just at the right moment. I know that I am always being guided on this journey.

Guest Post: JP, Sydney, and Caitlin

About a year and a half ago, I was fortunate to meet a wonderful family through Blake's baseball team. Their son, JP, played on the team with Blake, and during the season,, we all became friends. Of course we connected through the challenges we both faced with our children. This year they moved away, but we still keep in contact through facebook. Read on to hear the story of JP, Sydney, and Caitlin, told by their mother, Rachel.

 Tell me about your pregnancy with your first child, John Paul.

I have been blessed to carry three of my children to a time when they can live. With my first child, John Paul, my pregnancy was horrible morning sickness leading me to be diagnosed after a few trips to the ER with Hyperemesis Gravidarum. Eventually in my second trimester I would go on to get some of my energy back, enough to work until I was 34 weeks, where I began having contractions that were 2-3 minutes apart. Thankfully they were able to give me a shot of Terbutaline at the hospital to stop the preterm labor at this time while keeping me on observation overnight for having dilated to a 3. I went into preterm labor two more times that same week, and finally it was discovered it was due to how sick I had become with double ear infections and Bronchitis while having a UTI. My son, however, would go on to be born at term 39 weeks. While we tried for natural birth, it was eventually discovered after 19 hours of labor that my son had become stuck behind my pelvic bone, thus making it necessary for an emergency C-section. John Paul would come to greet his family at 5:05pm August 19th, 2006 after close to 24 hours of labor at a whopping 8lbs 4ozs and 21" long.

How were his early months and years? Did you ever notice anything not quite right?

Things went well with Johnny. He was always ahead of his milestones, from holding his head to sleeping through the night at 3 weeks old. However, he would later stop sleeping through the night at around 9 months old, where he would start sleeping in what I would refer to as "nap cycles" sleep for 2-3 hours at an interval and then up for four hours. He would go on to act like this for several years. At 15 months old, I had a neighbor who had a son around the same age, and we would get together often for play dates. It was during this time that I noticed that her son would be able to pay attention to being read to, or play for longer periods of time with a toy than my son. In the meantime, my son would run circles around us all until we were just ready to drop of exhaustion. As he continued to age, he became more "stubborn" with not listening or following household rules that had always been in place, always testing limits.

When did you discover you were pregnant with your second child? Were there any complications?

When my son was a year old I was diagnosed with Hashimoto's Disease, and was told that I would never be able to have more children by multiple doctors. We had always planned on having more, but it just didn't seem to be in our cards. So, when I discovered that I was pregnant with our second child Sydney Marie, when John Paul was four years old, both my husband and I were elated. Finally, we felt a chance to complete our family. I discovered I was pregnant with her on September 2, 2010. I would find out the next day when I went to the doctor for confirmation that I was 10 weeks along, and therefore, just about done with my first trimester of pregnancy.

This time around things were different. I felt great; I was never tired, never got morning sickness and even lost 20 pounds in the beginning of my pregnancy. However, something just always seemed off, like something was wrong with this pregnancy, and despite all the ultrasound and tests nothing proved to be wrong with our beautiful baby girl. I was young, 25 years old, I was gaining good weight; nothing spoke of anything being "off." Until January 1st, when I was at Walmart and started having low-bearing pressure, thinking that this was my second child and about to be 27 weeks the next day, I simply thought I had breached that period of every pregnancy when one begins to experience the lovely Braxton Hicks. So when we got home, I took some Tylenol and went and laid down where I would fall asleep early that night around 8pm. I would wake up that night with the feeling of needing to use the restroom, where upon I discovered that I had blood in some discharge. At first it didn't seem bad so I woke my husband up and told him. However, something tugged at me to go check and see if it had gotten better or worse, and it was.

I drove myself to our local hospital to get checked. While there, I was told that I had become dehydrated and had simply overdone things. I was monitored by the nurse for a couple of hours and then sent home, having never actually seen the doctor. I would at 3am go on to start having some spotting again but had been told this could happen as I had "overdone things." It never occurred to me that something else may have been going on. At 9:15 (the times are so clearly etched into my memory as I had a cable box that sat on top of the TV that dared to stare at me so it seemed), I woke up thinking that I had just had my water break. But who breaks their water on the day they become 27 weeks? I then began to have contractions that were 3 minutes apart. Clearly, I had "overdone it" so I laid back down to watch cartoons with my son. However, the contractions refused to give up, so I packed a bag for my son, tried to find someone to come and get him while I called my husband to let him know that I was in labor.

What happened next? And what did you discover about your new baby?

I rushed back to the same hospital, never thinking anything would be wrong and that I would be going home pregnant. Instead, within two hours I delivered our precious baby girl Sydney Marie via C-section at exactly 27 weeks. We learned that this was a blessing in disguise as my daughter would be born this tiny 2lb 2oz baby girl with her cord wrapped around her neck 3 times and strangling her. If she not been born when she was, she would have died in utero. However, this would send our family on the perilous journey that is called prematurity. Sydney was born too soon, too soon to breath on her own, or to maintain her weight as we soon watched her plummet to 1lb 13ozs. She couldn't eat on her own so she was fed via IV, and syringe-fed breastmilk at mere drops. She fought and won her battle and came home 83 days later from the NICU she had been transferred to via ambulance the day she was born.

When you have a child who's born as a micro preemie or preemie, it seems that they hand you this "book by mouth" that contains a list of all the possible things that could possibly go wrong having a child born too early. Things like Cerebral Palsy, brain injury, blindness, cognitive disabilities, the list went on for miles. But, we felt blessed simply to bring home this little 6lb 13oz baby girl almost a full 3 months after she had been born.

What did you notice in her early months and years?

Sydney did not like to be held, or rocked, and she looked like a newborn but acted like an older baby who was unable to do anything for herself. She would eat and sleep, never wanted to be bothered with anyone or anything. As a preemie you have two ages: a chronological age- the age you actually are; and an adjusted age- the age you should be if you were born full-term. At six months old, we started the typical baby food stages, only it was noticed that Sydney always slouched to one side. We figured it was because she was still so tiny she could barely be seen in her highchair. With time it became more and more evident that this slouch persisted. She was also significantly delayed in her milestones, but we were warned this was a possibility; she had been born early after all.

When did you discover you were pregnant with your third child? What was the pregnancy like?

We were terrified yet excited to learn on Sydney's 1st birthday that we were expecting our third child Caitlin Marie. We of course had our NICU memories flash before our eyes and were so scared to have a repeat. However, our OB assured us that the likelihood of having another preemie like Sydney was very low even though we never discovered the reason she did come so early.

My pregnancy with Caitlin also was a breeze my first trimester. I walked a good average of four miles a day taking our son who had started kindergarten at this time to school and back. It would not be until I had to take my son to the ER for an illness that things would go awry when I was in a hit and run accident on the freeway that caused me to started having contractions at 14 weeks. However, after a thorough exam right after the accident my OB said the baby looked great and I would soon be on the road to recovery but to be on modified bedrest for a few days just in case.

But, things never did slow down. At 18 weeks I would be rushed to the ER for preterm labor, placed on bedrest for a month, which is extremely hard as I had a 1-year-old and a 5-year-old at this point in time. But, I did do my best to follow doctors orders. It would go like this for weeks; be fine for a while and then have some problems with contractions here and there. I had routine monthly cervical checks to make sure I was dilating or shortening.

Every week I got closer to that 27 weeks was held with baited breath. It finally came and went and I began to relax and enjoy my pregnancy. Once again at 28 weeks I found myself back in the Labor and Delivery with contractions, where my OB performed a test called a Febronectin test (Ffn) that is able to see if your at risk of preterm labor within two weeks, and it came back positive and put on bedrest but told that I was good to go. I then found out I had gestational diabetes with this pregnancy, and it was particularly bad, as even on Metformin my blood sugar levels were out of control.

What was your delivery like with Caitlin? Were there any complications?

So, it was decided that I would be placed in the hospital for a couple of days at 31 weeks just to be monitored as I was taught how to use insulin injections. While there my doctor wanted to run more tests since I was at risk of going into preterm labor. One test came back fine, and I was moved to an antepartum room where I would spend a couple of days and then later be discharged. However, no more than five minutes in my new room than the nurse came back with a wheelchair and some bad news. I was funneling, which means I was dilating from the inside out. Two hours later I went into labor and was unable to stop it. I was sent to the hospital my daughter Sydney had been in the NICU at so that Caitlin would have the support of the NICU should I deliver her early.

Fewer than 24 hours later found I was being prepped for a classic C-section and Caitlin was born at 31 weeks 1 day, a full month later than her sister had been, at 3lbs 10ozs and 16" long. We felt more prepared, not just as parents but as a family this time around. Even the NICU staff remembered us, and would often ask how my older two children were doing.

What did you discover about Sydney and JP at this time, and then with Caitlin?

It was during this time that Sydney was learning to walk, only it wasn't a normal walk. She would fall constantly and they were bad falls. While we helped Sydney learn, we were dealing with JP who was diagnosed with severe ADHD and Oppositional Defiance Disorder the year before. Trying to juggle all three became quite the challenge.

At 65 days old Caitlin would finally come home to join the family. Only I would soon figure out that she never seemed to notice faces or lights being turned on or off. And she would scream if she couldn't sense anywhere near her. Telling myself she was fine, she hadn't been cleared of ROP (Retinopathy of Prematurity); that's all this was. An ROP check 2 weeks later revealed that my daughter was blind. Her eyes were perfectly formed; there was nothing wrong with her eyes. Her brain had simply turned her eyes off. A diagnosis of Delayed Visual Maturation or DVM would be given. It would be later discovered that while looking through her NICU pictures, it was evident that she had sight at one point shortly before she came down with her meningitis, a common illness preemies can develop in the NICU.

After discovering all of this with your kids, how did you manage?

This was extremely hard! Here I had a child who had ADHD/ODD and would throw the world's
worst tantrums, severely struggling in school to the point he spent most of his time in the principal's office instead of in his 3 hour long kindergarten class, a daughter who still needed to be carried
everywhere because she was struggling to walk and now a beautiful baby girl who would never know what a rainbow looked like, or what it looks like to watch the rain fall. It was truly devastating, but I had to keep it together for the sake of my children. Within a few weeks of getting the news of Caitlin's blindness, Sydney would be referred to a Pediatric Neurologist to see what was causing her delays and why she still was falling so much- to the point she had fallen and broken her nose at one point. It would lead to a brain MRI, where it would be discovered that Sydney has a Periventicular Leukomalacia (PVL) or dead brain matter; two spots were clearly indentified in her brain as being
cysts. It would be said that due to her cord strangulation at birth, she had suffered a stroke in utero-- this had caused our baby girl to develop Hypotonic Ataxia Hemiparesis on her left side, basically meaning that she would be forever weaker on her left side than on her right, and that she would never have the endurance to walk very far without constantly falling and may eventually require a wheelchair or special needs stroller for long outings. Which 6 months later she would be given the prescription for.

How are your kids doing now?

Sydney is about to turn four years old in January. She's a bright star in our lives. She has some behavioral issues that would resemble autism due to her brain injury, such as sensory processing disorder, and tends to be socially awkward but she's such a love and can be a bossy mother hen to her little sister Caitlin. She does still have some falls and recently discovered she has problems with her hips, which we are still trying to determine.

Caitlin, over time, went on to regain most of her eyesight, but still struggles with it from time to time, most often in darker rooms or at night. Besides being tiny for 2.5 years old, she's such a bossy little one who is determined to make her presence known wherever she is in her family. She also has SPD, and is currently undergoing testing for autism, as well as CP. Caitlin, though, doesn't let anything get her down for long, much like her bigger sister Sydney: two very determined little souls.

John Paul is now 8 years old. After several years of fighting teachers and schools, he recently was moved to a CCB classroom, or Cross Categorical Behavior Room for kids who for whatever reason have either behavior or emotional disabilities. He struggles constantly with low self-esteem, impulse control issues, and depression, all factors of ADHD. He attends therapy outside of school a couple times a week to help, after he tried to hurt himself significantly at school one day in September. I have come to learn, both from my husband who has ADHD and my son's therapists that ADHD is rarely just a hyper little kid who can't pay attention in class--these kids truly suffer. My son is currently undergoing testing for an IEP that took me almost four years to fight for; we have already learned through this that he too has many sensory issues.

How have all the challenges with your children changed you as a mom? What have you learned? What do you want others to know about your children?

Through all of these challenges, I have learned to become a better person--to see the world differently. It's not always black and white; things don't always go according to how you planned them in life. I have learned to become a much more patient person, more empathetic and sympathetic with others going through the same things, an advocate for children born too soon, and of children like my son who know they are different but want so badly to fit in just like every other typical 8-year-old boy.

Due to fighting for my children's medical care, I have gone back to school to become a Registered Health Information Technician and a Certified Coding Specialist, so that I can work for places that advocate for children with special needs. The only thing I want other people to take from my children is that they are people too. They deserve the same love, devotion, and determination that any other child is given to strive for their goals. Also, that prematurity can happen to anyone at anytime; it doesn't discriminate from rich to poor, educated or not. I was a young mom, having had my oldest at 27 years old--I had no risks.

I often tell friends who comment to me how strong I am, and that they never could do what I do on a daily basis, that I am not any stronger than they are--I simply was dealt a different set of cards to play in the game of life. My children are strong individuals who have already overcome much more than most, but they continue to overcome things with a smile and a generosity not typically seen unless you have been blessed to live in the world of special needs children.

Blessings despite the trials

So this month is drawing to a close, and for some reason, it has been a really horrible month as far as unexpected trials. Not big things, just things that broke and had to be fixed right away so we could continue living in our house and drive our car. Our sliding door got stuck and had to be repaired, my car battery had to be replaced, the water heater stopped working and had to be fixed so we could have hot water, we had an outbreak of ants on multiple days, we had a problem with our sprinklers, and then yesterday we found out we need new health insurance for the kids by Dec. 1st. For some reason, we never got the letter in the mail, and now we are just finding out, and this means all the wonderful appointments I have lined up for Nathan next month, including his weekly speech therapy, are all in danger of being cancelled due to this problem. Add to this a bad cold for Nathan and my husband. So yes, I have a lot to complain about right now. But I'm not going to complain. I'm going to just take things day by day, and try to focus on more important matters, like my kids.

One blessing amongst the trials: Nathan has been attending his early start intervention class since the first week of November, and is doing so well. He gets to be in the cutest little class for three days a week, 3 hours each time, and I could not be more grateful. He is learning in this class, he is socializing, and he is progressing rapidly. And I, on the other hand, am discovering what it's like to do things without a toddler around, like shower, grocery shop, and just breathe for a little bit.

Another blessing: Blake turned 8, and he was able to have a super fun birthday party. He was able to attend cub scouts for the first time, and soon he will be baptized a member of the Church of Jesus Christ of Latter-day Saints. He is doing well in school, and in his piano lessons, and when I take the time to really listen to what he has to say, I am amazed by what a special, smart boy he has become. You know when you get too busy to really listen to your kids, and kind of just halfway agree or respond to what they blurt out at you? Easy to do. But just last night, I forced myself to be truly in the moment with him, not caring about all the other things pressing on me or stressing me out, and I listened to him read a book to me that he was excited about, and we talked about it, and it was like I was seeing a whole new side of him, like I was seeing my child again for the first time. Children really do bring so much joy to our lives.

And finally, the last blessing: Julianna went to the dentist twice this month to have cavities fixed. The first time, it was an easy one that didn't require a shot. But the one she had fixed today did require one, and I could not have been more proud of how she did. She sat still and kept her calm, but did somehow manage to bite the dentist's finger, which I'm sure he wasn't too happy about. And when it was all over, she started to cry a little, and it was because she didn't like the way her mouth felt. I've never had a cavity, so I don't know what it feels like to have my mouth numbed. So I can only imagine what it feels like to a child with autism and sensory issues. Despite it all, she did it! And this is after taking her to a more specialized dentist who said the only way to fix her teeth was to put her asleep because he worried about traumatizing her. This also came with a big price tag, which I did not want to pay right now. But more than that, I really believed in Julianna, and I knew that she could do it this time. I'm so glad I didn't give in to that dentist's demands, and trusted my own mother's intuition. Julianna even said she would have no problem doing it like this again. She's growing up and doing things I never thought she would, and that is a huge blessing.

Most days I am beyond worn out, emotionally and physically. Life just seems too hard most of the time, and I often find myself feeling negative or angry or just in a bad mood. But when I take time to think about the good things that so often get buried in the little trials, and focus on those, life isn't so hard anymore.

Guest Post: Landry and Willow

I met Kati on the Cleft Moms Support Group facebook page. She shared something that really touched me, and I knew she would be a great person to share her story. Read about her 5 children, particularly her youngest two; Landry, who was born with Optic Nerve Hypoplasia; and Willow, who was born with a unilateral cleft lip/palate.

 

 

So tell me about your children.

 

A mother of 5 kids, youd think I've seen and done it all.  Ha! My journey has only begun.  Let me introduce myself. My name is Kati, and I have 5 beautiful children. Garrett is my oldest at 14, then comes Michaela at 11 (she is my stepdaughter, but for all good reasons, she is my daughter). Dalton is next; he turned 9 in July. Now comes the babies: Landry is 2, and sweet Willow is almost 5 months.  Where our story starts, thats a WHOLE other tale. Where we start is in August of 2011.

 

What happened in 2011? What was your pregnancy like with Landry?

After grieving a miscarriage at 13 weeks of pregnancy in May of 2011, then a move, and also school starting up, I never would have guessed we would have gotten pregnant this quick.  Everything went perfect. Being over 35, it put me in the high risk category, but once we moved back to our original town, my OB/GYN took me back to a normal low risk. Landry was born 6lbs 6 oz with reddish brown hair and beautiful fair skin.  At 6 weeks old we noticed a difference in her eyes that concerned us. At 6 months she was diagnosed with Optic Nerve Hypoplasia. This means she is partially blind in her left eye only, and has perfect vision in her right eye. 

 

How is Landry doing now?

 

It has been a rolllercoaster of emotions for us, but we have maintained a mantra of  "it could be so much worse for her."  Does it slow her down? Not a single step.  I often get asked by strangers why she has glasses,  and I educate them the best I can.  It not only feeds my soul as a mom of a "special needs" kid but as a nurse also.  With both my "special needs" babies it does.

 

 

Tell us about your baby, Willow.

 

For my sweet Willow, her journey has just begun a new rollercoaster for us.  Willow was born with a unilateral cleft lip/palate. Her journey has already had some huge impacts on us, mainly because until the literal second she was born, we had no idea about her "disability." I personally do not see these as disabilities, in either of my angel girls. Don't get me wrong, it's by no means easy. But neither is parenting.  God has a great sense of humor when it comes to anything. I've come to discover that among other things in the last two years. Our schedules are filled with appointments some weeks and activities for the older kids, but mainly they are filled with us. Not the, "Oh my goodness, what's wrong with your baby??" But us, the who we are everyday us.

  

What are some stories you'd like to share about raising Landry?

 

I could share many stories that we have been through in the last two years with our babies.  But I'll share the ones that have had the biggest impact on our lives so far. We (my husband and I), were out grocery shopping for the first time with Landry since she had been diagnosed.  Her eye specialist recommended that we patch her "good" eye to help strengthen and possibly rebuild the pathways for her nerves in her eye. She was about 7 months old at this time. As we were standing in the checkout lane, two women walked up behind us. Landry was on my shoulder, furiously chewing on her hand, and one of the ladies remarked on what beautiful hair she already had, and began the usual conversations of small talk, asking how old she is, where did she get her beautiful hair, etc. The conversation then turns to, "What's wrong with her eye? Did she have surgery? Is she ok?"  My husband stands by patiently, as I fulfill my need to educate. Until this point, only one of the ladies is doing most of the talking. I wrap up what I usually tell people, and turn to walk away.  That's when I hear the words that NO PARENT should EVER have to hear.  "Oh, that poor baby, I wonder if they realize how retarded she will be. I feel so sorry for that baby." Needless to say I walked away with my husband by my side and beautiful baby in my arms, furious at the world. 

 

What about with Willow so far?

The other story I will share is the day Willow came into the world. I had a perfect pregnancy with her, too.  Again due to my age, we were considered "high risk." We went to a specialist, who, considering my health, thought it was a joke for me to be there, and cleared me for again a normal pregnancy.  I had discussed with my OB/GYN about whether to do an amniocentesis or not, only because there be something we needed to prepare for (like with Landry).  We opted out of doing the amnio, and instead we did blood work that would give us the exact same results but without the pain or risk of miscarriage. 

 

We found out at 13 weeks of pregnancy that we were having another girl. After about a 5 minute grieving period, only because we were trying for a boy, we picked out her name,  Willow. We couldn't have picked out a better name for her either. At that time we had NO CLUE, even with sonograms and blood work, that she was going to be born with a Unilateral Cleft Lip and Palate (UCLP). Again our pregnancy was perfect, and as with my other children, she had to be induced.  At 12:47 pm on June 10th, at a hefty 7lbs 0oz even, she was here.  At 12:55pm the delivery room was silent, except for her cries and the machines making noise. Everyone was in shock. None of us knew. My husband and I looked at each other and began to cry ourselves, out of fear, out of joy, out of pure loss of what to do next.  Our perfect baby wasn't as perfect as we dreamed she would be. Again we pulled our bootstraps up and pulled ourselves together.  

 

Our older children came up to the hospital later that evening to meet her for the first time. We weren't sure how to tell them, other than she just looks a little different.  The two oldest kids cried when they saw her. Landry, she climbed up on the bed with me, kissed me and kissed Willow and called her Awe Baby.  Our oldest child, Garrett, probably had the hardest time with it.  After we left the hospital and were at home, he asked me, "Momma, why did God give us these 'broken' babies? What did we do so wrong to deserve it?"  I looked at him and told him, "Son, these girls AREN'T broken, any more than you or I are broken. They were given to us by God because they are that special. They are going to help change the world."  No truer words have I ever spoken.

 

 

How has being a mom to Landry and Willow changed your life, and your view of motherhood?

 

These girls have changed MY world. They have become an inspiration to me to see the world as they do; to raise the awareness for their causes; to be an advocate for not just them but for ALL parents and children with "special needs."

 

I wand to share this last small story. In July we had my husband's family reunion. One of his favorite aunts was there. She hadn't seen Landry in two years. Landry was just about 9 weeks old when she saw her last.  Aunt P had been in an accident many years ago and it had left her very badly disfigured. I didn't know how well Landry would react to seeing her, and was concerned. She had also never been around any other babies, besides Willow and the older babies from daycare. My husband's cousin has a daughter about 6 months older than Landry, named Shae. I learned so much about myself that weekend and how my children perceive the world around them.  Landry bawled for days after the reunion because she wanted her Auntie P to stay and play with her and for Baby Shae to come home with us and be our baby too. My "one-eyed" daughter saw no difference between herself and Aunt P. She saw no difference between her baby sister and Baby Shae.  Like a child that sees no difference between the color of skin, which again, she saw NONE!!  

 

My girls and all my children are amazing. I am so privileged and blessed to be able to call them my babies, and for them to call me Momma. My heart swells with pride, even more so now than before when I look at them. They have taught me so much more than I could have ever imagined. Patience, kindness, respect for others' differences, and how to just be a better human being in general.  God made these babies special for a reason; our rollercoaster rides are just part of the fun. May God bless each of your families as you continue on your own rollercoasters.

The fight is over

Well, sometimes I have to admit defeat to the school after starting a fight, and I don't like it! Turns out after calling a person who really knows her stuff (she is over all the county as far as IEP laws go and is a parent advocate), I was told that pulling a child out early for ABA therapy is not allowed no matter how you want to write it in. She said the state is cracking down on IEPs similar to mine, and there was a training recently about how students should never miss school for therapy, etc. She apologized, and wished she could tell me differently, but unfortunately not this time. And she was really surprised that I'd gotten the district to agree to let her miss school, even for a trial period!

So I had to do the thing I dread most, and that is admitting to her resource teacher that I was wrong, that we don't need to have an IEP, that Julianna will be attending school all day starting next week. I really hated writing that email, and I even waited a couple days before I did.

Now you might be wondering what we are going to do about her therapy? Well, I have worked it out with her ABA providers for them to come from 3:30 to 5, Monday through Thursday, and then Fridays will be 2-5 like they were before (Fridays are always minimum days). They agreed to allow her less than the minimum required time of 2 hours, which is very generous. And we still get to end at 5, which is very important to me. I don't want our ABA to cut into family time or dinner time, or free play time every day after school. I also like the idea of someone coming every day after school, because maybe it will seem more effective that way. Plus it might force me to keep my house clean EVERY day, which is good!

I am also very happy that I don't have to fight something right now. I was starting to work up the energy and motivation, to believe that I could win something again. But honestly, when that woman told me there was no point in fighting it, I felt so much better. The last thing I want to do right now is fight the school district.

Something else I mentioned at the IEP last week when they first told me she could no longer go home early, even knowing how well it's helping her academically, was that this was why many parents home school their children now, especially ones with special needs, because the demands on your time to accommodate these children are often very high. They all nodded in agreement. I have done homeschool before, for just 6 short months, right before I discovered I was pregnant with Nathan. And I knew I really couldn't do my very best to teach Julianna if I had a newborn, so I placed her back in school. Looking back, I know I was inspired to make that decision, because Nathan's demands for my time were more than I ever imagined they would be. But looking forward, I know that homeschool is definitely something in Julianna's future again, I'm just not sure when.

What I do know is that every time I am faced with a problem from an IEP meeting, and I have to figure out a way to solve it, no matter what, I am learning the ins and outs of special education law. I really should just take a class! I hope that all this knowledge will serve me well for something down the road, or will serve someone who might happen to read this. Until the next IEP!

Another fight to the death

Oh, school. School has been one big rollercoaster for Julianna. Just when I think things are perfect, settled, working wonderfully, is when everything comes crashing down. I don't understand why it always ends up that way, but I am on the verge of tears right now, thinking about what I have to face in the next week to get things fixed.

When you have a child with special needs, you will most likely write up an IEP (Individualized Education Plan) with your school district. I have been to more IEPs than I care to admit over the many years Julianna has been in school. And the last year or so, they've been just fine. But then sometimes, you go to an IEP, and a big gigantic grenade is thrown your way, something you weren't even told was on the agenda, and something that can turn everything you've fought for upside down. This is the nature of the IEP meeting, and to be blunt, it SUCKS! Yes, I said it, and I usually never do, but it's true.

Today was supposed to be an easy IEP, where we would discuss Julianna getting OT (occupational therapy) again, and also being evaluated for APE (adaptive PE). This was the agenda, and I did not know anything about the third item until suddenly they were saying that the trial period for allowing Julianna to miss school for 90 minutes on Monday and Wednesday in order to do therapy at home from 2-5 was now over, and that if she missed school starting in November, she would now be marked as unexcused. What? This is what people do after a trial period? After we had just talked about how she was doing better than she's ever done in school, in large part due to her therapy. How she's getting 3's on her report card now. 3's!!! She's never gotten a 3! That means she's meeting basic requirements for her grade level!! This is almost unimaginable to me!! But yesterday, as I sat at her parent teacher conference with her great teacher and heard about how great she is doing socially AND academically, and I saw those 3's on the report card, I was overcome with gratitude. Finally, I had found a great system for her that included just enough school and therapy. It was working. We were seeing results!

So then to go to an IEP meeting the very next day and hear that all that would be taken away, EVEN THOUGH IT'S WORKING, is complete nonsense. We all sat there and agreed that this therapy, though she is missing some school for it, is helping her in school. But of course, they are bound by law, and have to make sure all students attend the full day, blah blah blah. So they made it seem like their hands were tied. I asked if she could get some of the ABA therapy at school, so she wouldn't have to be there, and they said that type of therapy is only offered to students who have problem behaviors at school, and then the school district contracts with ABA providers to get it arranged. I asked if we could just write into her IEP that the therapy at home was part of her education, and they said no. They gave me no options, other than to just do the three hours of therapy after school. But I told them there's no way I'm going to force my daughter to go to school for 6 1/2 hours and then do another 3 hours of therapy, and let that cut into our family time and dinner time. So we were stuck. And I was so flustered, that I didn't know what to do. I signed the IEP. I told them I would try to figure something out. And then I came home, and went, great, what did I just agree to? What JUST HAPPENED? I talked to Joel, and he said we need to fight this. We don't have to be flexible for them just because they want their money. And WHY DID I SIGN THAT IEP?

Since then I've been on the phone with just about everyone I can think of. Advocates, special ed reps, I even called back the person from the district who was at the meeting, and told her I wasn't prepared to discuss this topic, that I didn't even know she'd be there, and that I don't want to change anything. I told her I wished I hadn't signed the IEP. She seemed apologetic, and told me that she thought I knew that that was the purpose of the meeting. I told her no, sorry, I had no idea. So she said we do need to meet again to discuss it. I started getting emotional, telling her that she's never gotten a 3 on her report card before, and that's in large part because of how wonderful this therapy/school system is working. She said we would try to work it out. But honestly, I don't think they're going to suddenly feel like they can allow her to miss that 3 hours of school a week. It's going to be a fight, another long fight.

I just talked to an advocate who is a relative of one of my friends. I told her the situation, and she said that I need to write a letter, request another meeting, that this meeting wasn't valid because the person from the district was not listed on the notice of action for the IEP as attending, and that the best solution would be to force the district into contracting with the ABA agency we are using and allow Julianna to be pulled out of the classroom for therapy there. If they have to keep her the full amount of hours, then they have to be flexible, too. I like this idea, and I hope they will go for it.

So I'm just really tired now. I've been on the phone for the last two hours, and poor Nathan got put in his crib just so I could make these phone calls for my daughter. It's okay, he ended up falling asleep. This is my life sometimes, and there's not much I can do. I have to reach deep down and find that fighting spirit that I still have, and get this fixed. Wish me luck!

Crazy weeks

Some weeks are pretty laid back...no doctor appointments, no therapy, no anything, except the usual errands and responsibilities. And then some weeks are the complete opposite, like this week. Those weeks where all you can do to get through is dream about Sunday, and look forward to when you don't have to rush around everywhere!

Today was a non-stop day. Kids off to school, get ready to take Nathan to speech therapy (30 min drive), run into Best Buy right before to trade an SD card that was the wrong size for our new video camera, rush over to therapy, run to Sam's Club to get a few things, deposit checks at the bank, come home, put Nathan down for a nap, clean the kitchen and the house so it's not messy later, wake up Nathan, get the kids from school, go straight to Julianna's psychologist appointment with the kids, rush home to get dinner ready for the missionaries coming over, put Nathan to bed, make phone calls/texts for another thing I'm doing, put older kids to bed, relax, finally. Days like this I wonder how I even survived! I don't like to be super busy, but sometimes it just all happens on one day, and I can't change it. Unfortunately, this entire week has almost all non-stop days, and I'm not happy about it!

That psychologist appointment, however, was the highlight of the day. Her wonderful psychologist has been helping me with the 1, 2, 3 Magic, and told me that if Julianna can reach the goal of 21 days of no hand biting, she would throw her a little party. So that's what we did. We brought cupcakes, and she made a special certificate just for her, and she made it fun, and we did hip, hip hurrays, and clapped and cheered, and the look on Julianna's face was priceless. We wanted to make sure she knew what a big deal it was for her to accomplish this goal, a goal that just a few months ago, I thought would be impossible. If it weren't for this new psychologist, we would not be at this new place for our family.

 

Here she is blowing the candles on her cupcakes, and holding up her certificate. After that, she got out some coloring books, games, and puzzles, and we all sat with her (Joel met us there from work) and played together as a family with the woman who helped us reach a huge milestone. It was a great moment, something I will never forget. I am so very proud of what Julianna has done in the past few months, and I have a new hope for the future with her.

 

In other exciting news, I found out from Nathan's early start teacher that instead of her coming once a week for an hour to our home, Nathan can attend an early start class of 18 mo - 3 year olds, with a 1:3 teacher/student ratio, at the same place Julianna went to preschool many years ago! As I've mentioned before, I LOVED her preschool, so if Nathan has the opportunity to go to a class like this, I just might jump on it! I'm not sure how many days a week it will be, but it's 8 am -11:30, and he gets to eat lunch, too. So next month could be something new for my little guy, and a lot more driving for me!

 

 

Even though I despise the busyness, I keep going, because it's all for my kids. They need me during these years, and depend on me for a lot. I feel so fortunate that I can be there for them, and be there for all these moments that mean so much to our family. So yes, we are busy, but we are also doing an important work. Family is the best!

The Cure for Stuttering?

So we are on day 16 of no biting (although the weekend brought a few close calls, which really could have broken her track record, but I am learning to look at each situation now that she doesn't do it anymore, and see what is triggering it) so I will not count the little tantrums over the weekend. I can't even believe we've made it this far. But there has been another development in this beautiful, unique girl of ours that has also been a struggle, and that is stuttering.

Out of nowhere, around the beginning of this year, I want to say, she began stuttering. A lot. She would stutter so much that she would even tantrum over not being able to get her words out. It has been very challenging for the entire family. It has tested my patience to no end. It literally wears Julianna out, just to be able to speak. We have talked to her speech therapist at school, and she's noticed it, and they are working on it. I even thought about getting her more speech outside of school through medical insurance, but knew with everything else she's involved in, it just wouldn't be practical. So we've done the best we can as a family to help her speak better. We've even been praying about it a lot lately.

Last week, at her activity days class for church (all the 8-11 year old girls meet for one hour to work on goals) they were doing some family history. In the beginning of this little booklet they were filling out, there was a space for Julianna to write about herself. The question was: What do I want people to know about me? Julianna's answer: My family wants me to speak well. I really couldn't believe this was what she chose to write. Have we really been coming down on her that hard about it? I didn't think we were. So why was this the first thing that came to her mind? It made me really wonder. I mean, after all, being able to speak well is such an important thing. And this girl likes to talk a LOT. So when she has to use all her energy just to get out a few words, and I am standing there, waiting for her, coaching her, it gets old after a while. It really is not easy. And I feel bad that this is what she chose to write, of all the things she could have written.

A few weeks ago, I miraculously noticed (yes, another miracle coming) that when Julianna would shake both of her hands, she wouldn't stutter when she talked. I really don't know how I noticed it, I just saw her shaking her hands one day, and she wasn't having any trouble speaking at all! How could this be? So I stopped her, and said, "Julianna, did you just notice how you weren't stuttering when you were shaking your hands? Try it again!" She thought it was funny, and tried it. And it worked again. The rest of that day, every time she began to have trouble speaking, I would motion for her to shake her hands, and she would be fine getting the words out. And this has evolved over the past few weeks to her shaking only one hand slightly, and she really won't stutter when she does this.

I have no idea why it works. Maybe the motion of her hands someone sends the right signals to her brain, calming it down and allowing her to think clearly, and then speak clearly. Now that it's pretty much working (she might not stutter, but she does have the ability to stop and really think about what she's going to say instead of stuttering through it) I have to laugh about it. Which is worse, her shaking her hands, or stuttering? Hands down, I'll take the shaking hands.

When things like this happen, I have to think about how crazy my life as a mom is. I could never have imagined it to be this way, not in a million years. The kinds of things I have to work through, and learn, are beyond what most parents ever face. I still wonder why I was chosen to be this amazing girl's mother, but I was, and I feel blessed. Shake that stuttering away, Julianna! Whatever works.

Miracles

I hope I don't jinx myself by writing this post, but I really think a miracle is happening in our house, right now. I don't know why it took so long for this miracle to happen, but it finally is. Julianna has not bitten her hands in anger or frustration for 9 days in a row. Nine days where our house has felt a little more normal, peaceful, and enjoyable. Nine days is a miracle, because we've been dealing with this troubling behavior for almost 9 years, pretty much daily. I almost don't want to believe it, but it really is happening, and it's all because of that 1, 2, 3 Magic program we are doing with her.

It's interesting that I've tried literally every method out there to rid her of this behavior. Chewelry (chewable bracelets and necklaces), flavored chew sticks (we got her chocolate), completely avoiding the biting, telling her to count instead of bite, putting gloves on her hands when she bites (which she hates the feeling of), physically holding her hands down and away from her mouth, the list goes on. Nothing has worked. I guess what I am realizing is that sometimes, when you are raising children, things don't always change when you want them to, no matter how hard you pray or try. Sometimes they change because you felt inspired to take them to a new doctor, who introduces you to a method that you think has no possible chance of working. And then you try it, and it does. It's a miracle. After all these years, we are starting to put this one troubling behavior of hers behind us, and that means our family can be happier. But most importantly, she can, too. She will feel better and more at peace with herself because she doesn't have that impulse anymore.

We are hoping to get to 21 days in a row (the time it typically takes to break a habit) and if we get there, she will get her new doll and her psychologist said she will give her a nice certificate and we can have a little party for her. She's just as excited as we are! When we met with her last Saturday, and told her all the progress she's been making, her response was, "Oh, praise the Lord." And she is right. It took a long time to get to this point, but we got there. And I've had to trust in God for all these years, believing that we could conquer this.

I have been studying the topic "Trust in God" in my scriptures this week. I think it was something I needed to really, truly understand in my life right now. On Monday morning, after I had a quick but meaningful study (you never know when your kids will come storming into your bedroom), I came downstairs and remembered Julianna had to do a make-up math test because she got a low score. We sat down to do these problems, and I thought, there is no way I am ever going to help her understand this stuff. How is she ever going to learn this? How am I going to find a way to help her learn? And how will her teachers and aide do the same? I felt very frustrated and defeated, but we got through it the best we could (mostly me doing it) and I let her finish getting ready for school. Just when I started to feel very down and hopeless about the entire school situation, I heard these words come to my mind: "Trust in God." I immediately felt peace and hope again, and tears came to my eyes. She will be able to learn it, just maybe not right now. But I think about how far she's come in school, and again, I think of the miracles we have witnessed. I never thought she could learn to read, and she has. I never thought she could learn simple addition, and she did. I never thought she could learn to spell common words, and she can, all by herself. Each thing we accomplish with her just takes time, much more time that other kids would need. But she will get there.

Other little miracles happening right now...Nathan knows about 4 colors and can identify them. He has been working with an early start teacher once a week for an hour for about 3 months now, and he's already met all his goals twice in that short of a time. He continues to amaze me every day, and is the friendliest little baby around. Everywhere we go, he waves and says hi to people, and brightens up their day with his smile. He tries to count objects, and he sings little songs, and he knows animal sounds, and he just keeps on progressing rapidly. I don't think anything will slow him down at this point.

And of course I can't forget Blake. Doing well in school, becoming more independent, writing his own stories just like I did when I was young, and becoming an excellent piano player. He even wants to play the flute and uses my old flute to practice on. Yesterday when I got home from the store, he opened the garage door with the flute in his hand, excited to tell me that he could now make two sounds out of it. I love seeing that he's excited to play instruments and wants to do well. And with all that he has to put up with in this house, he's a great kid. It's easy to neglect your child who doesn't need as much help and attention to do well in life, so I am trying to make sure I don't do this. He is becoming a great little guy and will be baptized in just 2 months.

And as for me, I am taking things one day at a time. I started watching the show "Parenthood" on Netflix because so many people have told me I needed to. Well, it has brought back all sorts of emotions for me, seeing these great parents deal with their child's Asperger's diagnosis and then try to figure out what to do from there. I've definitely been there and felt what they are feeling. And watching them go through this process has made me feel like I really need to work on healing the pain that still hides deep down inside me from all that I have been through. I guess it's easier to just hide those feelings away and hope they can stay hidden. But what I need to do is face all of them, and rid myself of them, and replace them with better feelings and hopes so that I can feel truly at peace. So I, too, will get there, will get where I need to be as a mom, as long as I continue to trust in God.

Update on the diet

I really, really wish I could write more on my blog. I would every day if I could. It is just so hard to find enough time to devote to it. Now that the school year is back in full swing, and I am trying to do lots of things to the house as well, and Julianna is involved in therapy, and not to mention I have a very demanding toddler, it just can't happen. But I am at least trying to do it once a week! It's a good goal for now.

So we did allow Julianna to eat regular food as of one week ago. So far she's had only a few instances where I second guessed this decision. She had a horrible tantrum right before we left for church this past Sunday, one so bad that I thought for sure it was because she was eating gluten and dairy again. We were in the car when it happened, and Nathan even started saying "STOP!" in his car seat because her screaming was so out of control. But after allowing her to calm down in the car before we went inside, we were able to talk about why she got so upset (it was because we didn't let her bring a certain book to church) and I was able to ask her if she thought the foods she was eating were making her feel more angry. She said no, that she was just mad that she couldn't bring the book.

And I think she's right. Allowing her to eat regular food really hasn't changed her behavior one bit. She's still Julianna, and that means if you do not let her do what she wants, she will get mad, really mad. And this is something we are working on. I guess what made this tantrum exceptionally bad was the fact that we said no, she couldn't have the book, and she really, really had her little heart set on having that one particular book. I should have known she would tantrum like that. Over the years, I have been able to identify many of her triggers. But we were in a hurry, we didn't have time for her to go get it, and I thought she might be able to just let it go. Well, lesson learned.

But I would say overall, she has shown no adverse reactions to being on normal food again. She is so excited to eat regular bread, cookies, milk, cheese, yogurt, ice cream, crackers, the list goes on. I feel like as long as I continue the 1, 2, 3 Magic with her she will stop her tantrums and learn to control how she reacts to different situations. We have told her that if she can go 21 days in a row without biting or screaming, she will get a new doll. So far she's made it 2 days in a row. And then we will work on the next troubling behavior so she can continue learning how to appropriately respond in troubling situations.

Being her mom is not always easy. I often feel like I'm walking on eggshells, trying to avoid any type of outburst from her. But lately, I have started to relax a little bit more, because she really is loosening up herself. I just take things one day a time.

And by the way, remember how she randomly said to me, "You're the best mommy ever"? Well, that has turned into her new thing. Now, after she says or asks something, she'll say, "You're the best mommy ever." And actually, she has changed that a little, all on her own, and instead she says, "You're a dynamite mommy." She liked the phrase from "Wreck It Ralph." She really makes life interesting!

Julianna's GFCF diet--time to stop?

Back in the beginning of June, I started Julianna on the GFCF (gluten-free, casein-free) diet to see if it would help improve her troubling behaviors and tantrums. I felt inspired to do this, that it was truly an answer to prayer in helping her overcome the screaming and biting that we have been struggling with for so long. And not only have we been struggling, but Julianna has, too. She had gotten to the point where she was tantruming so many times each day, that she was the one that she wanted to stop, and that it bothered her that she couldn't do it on her own. So in my mind, when you have a child that has already overcome so much already, this was something that I knew we could conquer. And it was either going to be some type of medication, or a strict diet that has been proven to help children with autism in countless studies. We did medication in the past, for about a year, and all I noticed was that she gained a lot of weight. Only very slightly did I notice any improvements in behavior.

But I still took her to a psychiatrist, for the first time back in June as well, because I couldn't make up my mind. He prescribed a few meds, she took them one day, and let's just say it did not go well. Most likely too much medication. So I then took her to a psychologist, and at first I wasn't very impressed, and the summer got busy, and we weren't able to see her as often as we should have, but I had already started the diet, and knew that I wouldn't see any results right away.

Then we took her to see this psychologist in August, and she introduced us to a discipline method called 1, 2, 3 Magic. It's kind of old, from the 90's, but as I listened to her describe the method, I really felt like this might work for the screaming and hand biting. She let us borrow some CDs so we can learn all about the method and how to implement it, and we started using it, with her and her brother, because hey, he's got some issues with misbehaving, too! Within one week, I could not believe how much her tantrums had decreased, but it sure wasn't easy. Every time I saw her start to bite her hand or scream, I would say, "That's 1." And once I got to 3, I had to drag her to a time out spot (our laundry room) where she would proceed to scream for about 10 more minutes, and then I would start the timer for the time out. It had become so routine, these time outs, that when she knew she was done screaming, she would say, "Okay, Mommy, you can turn on the timer." So doing this, over and over, was starting to work. I couldn't be happier.

And then during all of this, she has been receiving ABA therapy for 9 hours a week. Every Monday, Wednesday, and Friday, her therapist comes from 2-5 and works just with her, mostly playing, but amongst all that play, I really think Julianna has been learning coping skills as well, and how to interact better socially. Though it was a lot of hours to commit too, I didn't give in. I knew that this time for her was desperately needed. For her to get 1:1 time at home for 9 hours a week was more than I could ever give her.

So about one week ago, I noticed that the biting and screaming was almost nonexistent. I wasn't getting on her about doing it like I used to. She wasn't being sent to time out as much. And then I realized it had been almost 4 months since she started this diet. I began to think about all the elements working together in this girl, and if they were finally showing the results we had been hoping and praying for. Seeing the psychologist, doing the 1, 2, 3, Magic, 9 hours a week of therapy, and the GFCF diet might have just almost eliminated Julianna's need to scream and bite in frustration. Could it really be true? Could all of these things actually be working together for Julianna's good?

I even started a chart where she would get a stamp whenever she would ask for help instead of resorting to biting or screaming. The chart was filling up. And she also got a stamp if she went an entire day without those behaviors. She had earned a stamp for that at least 3 times, which is HUGE for her. Come to think of it, I might owe her one of those stamps because I'm pretty sure I didn't see her bite yesterday, either. I really want to pinch myself sometimes! But I can't give up yet...I have to make sure that her brain is literally changed, that those little impulses that she used to have will never come back, and I think it will take more time, and diligence on my part as well, and also a lot of patience.

So why then would I allow Julianna to eat the party food in her class today that contains gluten and dairy? Sounds crazy when you've just read how I think it has been helping. Well, the last month or so, I would get that little thought, something has to go. You know when you have so much going on that you just can't do it all? And you begin to look at your life and think, what's one thing that can go right now? Every time I had this thought, it would always lead me to the diet. And now that she's back in school, there have been a few times where mistakes have been made on the diet. And even at home, I always wonder if I'm really doing it 100%, because you do have to do it 100% to make it work. So today, I told Julianna she could eat some of that food as an experiment to see if it will affect her behavior. I have read that once a child has gone GFCF and is exposed to one of the foods, the behaviors increase dramatically again. Letting her eat these foods today will help me determine if the diet really is necessary.

I have to admit, I am a little worried about what might happen. But you can't deny those feelings you get as a mom, you know? I doubt I will get a phone call from a frantic teacher saying Julianna has gone crazy. But what I do know is Julianna is old enough and mature enough to tell me if she feels different, or worse, or that she is having trouble controlling her impulses. I trust that she can communicate that to me now. What a wonderful blessing that is. So we will see if this diet continues after today's little test....

A Tribute to Grandmothers

Last week, I found out that my sweet grandmother Merilyn passed away peacefully in her sleep. She was a wonderful person, always so kind and giving, and I have many fond memories of her. She had a soft-spoken, gentle way about her, but also had the best laugh, which I can still remember clearly. Our family took many trips growing up to Las Vegas, where they lived, and we would stay in their house, and she would cook us meals, and Grandpa would show us his tools and share great words of wisdom with us. Now that they are both gone (my grandpa died over 6 years ago), I am left with the best memories. One of them is my wedding day. I was fortunate enough for them to attend. Another is when we were able to stay with them while driving down to California from Utah, and they got to meet Julianna when she was just a year old. I will miss my dear grandma but I know she is happy now that she is reunited with my grandpa.

 

Then just yesterday, I heard that Joel's grandmother Jean passed away. We have lived nearby "Nana" for the last 9 years, and have made many trips to see her. My kids have grown up knowing her. I will always remember her for being the most positive and upbeat person. I never knew her to get upset or frustrated. She truly saw life in the best way possible, regardless of the circumstances. One of the things she would always say when our kids would play in the house was, "Don't you just wish you could bottle up that energy?" She was a wonderful example to all, and she will be missed. Joel's mom, Beverly, has been taking care of her in her home the last 4 years, and it has been so nice to be able to visit them there, along with Tony. Nana will certainly be missed, but she is now reunited with her husband after 20 years.

Julianna's Red Hair

One of the most striking things about Julianna is her hair. Now I know I have three redheads, but Julianna's hair is definitely the reddest. And it took almost 4 years before she had enough hair to see little curls forming. Because her hair was so short in the first few years of her life, she was often called a boy, even with pink clothes on! I used to long for the day when she had enough hair to braid or pull up and do fun things with. Well, that day is here, and it's been here for a while now, and what I wouldn't do to have those old days back. Because let me tell you, Julianna's beautiful red hair is a problem in this house!

In the last couple of years, her hair has gotten VERY thick and course, and VERY curly. It is almost impossible to brush through, even with the best detangler. And because it is very hard to brush, and because she is has a very senstitive head, not to mention an assortement of sensory issues that most likely play into that, brushing her hair has become something I dread more than anything. I love how it looks when it's brushed, but doing it has to be the worst thing about being her mom. She is screaming and biting entire time, I usually end up screaming and pretty much crying by the time we are done. It's no fun at all.

So there are two more reasons why her long red hair are a problem: they prevent her from doing two very important things that I know she could do on her own: brushing and doing her own hair, and taking a shower or bath. Her long thick hair makes it impossible for her to do these things. These are key to being an independent adult. And she's almost 11. I am beginning to worry that we are running out of time. So I tried to think of how she might be able to take a shower all by herself. And it hit me one day: buy one of those handheld shower heads!! A few days ago, I got a nice one at Lowe's, and this morning we tried it out. I really thought this would be the answer to her showering problems.

Well, so far, I am beginning to see it isn't, just yet, anyway. She liked holding the showerhead, but had trouble aiming it on the right places (again, related to sensory issues), and had the most trouble aiming it at her head. I think the only way she will learn is to have me in there with her. So we will be approaching that very soon. But this morning, as I was brushing her very thick, tangly, curly hair yet again, listening to the screams that echoed through the entire house, me on the verge of tears, it hit me: I need to cut her hair! A LOT! Not only will it help solve the shower problem, but it will also solve the brushing her hair problem.

Oh, but to cut that beautiful hair! I am so hesitant, and torn! Can I really do it? What do you think I should do? I am taking a poll: should I cut this girl's trademark red hair much shorter so she can learn important life skills? Or should I continue on this way, drowning in showers and screams and tantrums, for the sake of her lovely hair? Tell me what you would do!! I need input.

The "Mom"ents of Motherhood

Most days, being a mom can be summed up in one word: exhausting. The spills and messes, the fights and tantrums, the crying and whining, all contribute to the complete exhaustion at the end of a long day. Being a mom can sometimes feel like you are barely keeping it together, trying desperately to keep your head above water so you can breathe, so you can make it to that part of the day where you finally get some "me time." Moms live for the me time--it's the only taste of sanity we get amid all the exhaustion.

But even among all the turmoil and chaos, the madness and uncertainty, there can be "mom"ents. Those times where, as a mom, you get a glimpse of why you do all that you do. Where you suddenly realize that you aren't failing, or sinking, or just treading water. They're not just regular moments, they are "mom"ents, because they give you the courage and strength to keep going day after day. Some "mom"ents are so big that they stop you dead in your tracks, and cause you to reevaluate everything. Today, I had a big one, and it came from my beautiful 10-year-old girl.

We were sitting in the car, waiting for her aide to get there, and out of nowhere, she says to me,

"Mommy, you are just the best mommy."

She said it with so much feeling and meaning, I knew it came from something deep inside her. I of course had to question her, because I really didn't believe it.

"What?? Why do you think I'm the best mommy?"

She didn't know what to say to that. "You just are."

And the only thing I could say to that was, "Wow, thank you!" and hold back the tears until she left with her aide for the day.

What did I do to deserve this "mom"ent? Me, in my workout clothes and pulled back pony-tail, yesterday's makeup because I was too tired to wash it off last night, who most certainly scolded her this morning while she screamed as I did her hair, who nagged her as she took too long making her lunch and getting dressed, who hurried her and her brother very impatiently to get to the car, who just last night rushed them angrily to bed because it was 9:30 and I was done being a mom for the day and even though she asked, was too tired to tickle her back, sorry. You mean that mom, who almost all the time doubts herself and her mothering ability, who worries every night while falling asleep that I've ruined my children because I yelled at them and was very impatient? That mom is the best mommy? Not possible.

This one sentence spoken by my special needs daughter has enough power to eliminate all those doubts and feelings about myself as a mom, because it was a "mom"ent that gave me strength and courage to go on. It doesn't matter how many other people tell me I'm a great mom. My own mom and mother-in-law tell me this all the time. People I know, friends, they all tell me this. And I kindly thank them. All moms say it to each other! But when you hear it from your own child, out of the clear blue, suddenly you really believe it. Suddenly you actually feel like you are doing a good job, and all those little negative feelings in your head disappear, those feelings that at times can torture you to the point of withdrawal and depression as a mother. Why do we do this as moms? Why can't we recognize all our wonderful qualities, all the endless things that we do do, instead of the things we don't?

Sure, when she gets home with her brother in a few hours, the madness and chaos will ensue. The turmoil, me treading water until I get that me time. But from now on, it's going to be different, because I know what she really thinks. That I'm the best mommy. This will keep me strong and courageous for a long time to come.

Treasure the little "mom"ents more than the chaos and the clutter. In the end, they are what really matter.

Guest Post: Landon and Mason

Today I am sharing the story of Jaime, who I met from the Cleft Mom Support group on Facebook. She was willing to share her story about her two children, Landon and Mason. Read on to hear her story and what she has learned from raising very special children.

 

 

Tell me a little about your family and background, and your first child.

In 2007, I moved to Texas to follow my boyfriend, and friend of 20 years. After officially dating in June 2007, we became pregnant soon after but miscarried. Over the next two years we became pregnant two more times and had two more miscarriages. In November of 2009 we found out we were pregnant again. We were so afraid of another miscarriage! We freaked out about any little thing until we were past 13 weeks. From 13 to 20 weeks we had a wonderful pregnancy; everything was great. At our 20 week anatomy scan our world came crashing down.

My doctor wanted me to be seen in Austin at an ultrasound specialist, so we traveled 3 hours. We had hours of scans done and an amniocentesis. They said our baby boy, Landon, was going to have hydrocephalus, scoliosis, and possibly other problems. They recommended that we have an abortion because our little boy may never live past birth. I am 100% against abortion, so I said no. Throughout the rest of our pregnancy we made trips back to Austin for follow-ups every three weeks. The pregnancy continued fairly normal. Landon was active and aside from what the doctors “saw” everything appeared normal with my pregnancy.

At 30 weeks I went into preterm labor and was hospitalized for 3 days for contractions and pre-eclampsia. I was released but put on strict bed rest. At 36 weeks on April 22, 2010 my blood pressure got to 179/119, and my doctor said that was the end. I was admitted to the hospital and we started prepping for an emergency C-section. Our son, Landon Christopher, was born at 5:42pm, 6 lbs 8.8oz, 19 ¾ in long. He was beautiful and perfect. The doctors took him straight to the NICU after allowing me to kiss him. I didn’t see him again until 11pm that night when a nurse snuck him in by me because I was in tears that I hadn’t held my baby. After just a few short minutes they took him back to the NICU, but first they told me that he was doing great and had no signs of hydrocephalus. The next day he was released from NICU into the normal nursery and we went home on schedule a few days later.

Everything was great, he was a typical newborn waking every few hours, his pediatrician was sure that everything was good. Just before 4 months old he all of a sudden started sleeping for 12 hours at a time, which sounds good except when it’s a “warning sign” to watch for. I called his pediatrician that day and they got us in to see a pediatric neurologist.  We again had to travel the 3 hours to Austin. The doctor had us do a CT scan. The next day she called us and told us she wanted to do another test before telling us her diagnosis. We went back a few days later and Landon was sedated for surgery where they drill a hole into his head and measure the fluid pressure, then inject dye to see where it all flows.  Landon went into the recovery room and my fiancé went in with him first.

While my two loves were in the recovery room my fiancé’s mom and I were in the family waiting room when the doctor came in. She sat down and put a CD into the computer and showed us the video of the surgery. She froze it on one part and said, “This confirms my diagnosis. Your son has partial agenesis of the corpus callosum and septum pellucidum. He will never walk, talk, or eat on his own. He will only be a 6 month old baby for the rest of his life… but I have another surgery so if you have any questions please contact my office.”

I started bawling and walked towards the recovery room, as my fiancé was walking out I fell into his arms in hysterics. He told me everything would be alright. Three months later we moved back home by the majority of our family. We saw another pediatric neurologist here in Wisconsin at UW Children’s Hospital; he had invented the “quick MRI” where children didn’t need to be sedated. Landon had this procedure done and the doctor told us soon after that the doctor in Austin was wrong. Landon only had a very mild case of hydrocephalus, he didn’t need a shunt, and he would more than likely grow up to be a normal little boy. We still go back for check-ups every 6 months, and as of today nothing has changed. We have a 4 year old son who is starting in 4K this year, he has a few minor issues (he wears glasses and has a few balance issues), but most people would never know we had any problems with the pregnancy or the first years with Landon.

 

What has been helpful to you in raising Landon?

The Birth to 3 program (early start) was so helpful for Landon. We started the program in Texas and continued it into Wisconsin until the week Landon turned 3. He saw occupational, speech, and physical therapists. They were all amazing and when he aged out I cried. They had become such a part of our lives. He then moved to early childhood at our local high school. He has an IEP in place and it will continue to grow with him. The teachers are amazing. They help with more than just school; they help with all aspects of our lives with Landon at home, in the community, and at school.

So good to hear that Landon is doing well! Now, please tell me about your second child.

We found out we were pregnant again in November of 2013. Everything was GREAT with this pregnancy. I was watched very carefully due to previous complications and being high risk. I had my scans done and everything came back normal--we were worry free. We were going to have another boy, who we named Mason.  I was able to thoroughly enjoy this pregnancy. Everything went good, I didn’t develop preeclampsia, and nothing was noted on any ultrasounds. I did have an elective ultrasound done and my sister-in-law and I thought we had seen a cleft lip; however when I asked the ultrasound tech at my doctor’s office they said that there was no cleft lip or palate and they already checked it out. So, we continued with no worries.

I had a scheduled C-section for July 7^th, 2014. When the doctor brought Mason around the curtain she had his face half covered but in my grogginess I didn’t notice, I just saw my beautiful baby boy. I kissed him and he was taken to the nursery and my surgery was finished up. I went into my recovery room and my OB came in and said, “Tina (the doctor who had brought Mason by me in the OR) told you about Mason having a cleft lip and palate, right?” I told him no, she hadn’t said anything to me about it. I started crying because of the unknown, because I was mad, sad, hurt, scared, and every other emotion a new mom already has, on top of the anesthesia and the pain medicine.

I was brought back to my room and the nurses brought Mason in. I was amazed at how beautiful my little cleft baby truly was. It wasn’t very bad at all, but he wouldn’t latch for breast feeding so after about 16 hours of trying each feed to get him to latch we switched to formula. The nurses had never had a cleft baby so they took to the internet to do research, as did I. We went through the learning process together and they were amazing help. When I was released on the evening of the 10^th we had already had an appointment with a speech therapist at Neenah Children’s Hospital. They gave us a special bottle to use (Haberman). It worked out way better for Mason to eat from. We also learned why it was so hard for him to eat; it would be like one of us without a cleft lip/palate to suck from a straw with a hole in it.

 

We scheduled an appointment to see a cleft team in Milwaukee at the children’s hospital. We went down there and they told us Mason has an incomplete unilateral cleft lip, and complete cleft of the soft palate, and gum notch. They didn’t really tell us too much more, they gave us more bottles, scheduled another appointment for in a month, and gave us pamphlets. The support groups I have found on Facebook have been amazing, my family has been supportive, and my friends have been loving. Everything has turned out ok as of now.

What has been the hardest part about having a cleft lip/palate baby?

When everybody left after I had Mason and I had time to look at him, I cried. I cried for a few hours because I was scared. I was scared about the unknown, I was scared for him and upcoming surgeries, I was mad the doctors didn't see it ahead of time. But at the same time I was happy we didn't know ahead of time so I could enjoy my pregnancy. I was scared about what other people would think of him, and I was already thinking about school and being bullied. Two of my nurses came and talked with me and helped me through this very emotional time, explaining I just had a beautiful baby boy. My emotions were crazy anyway, add into the mix of finding out about the cleft lip and palate and it was enough stress for anybody to want to cry. And it was ok to cry, it was ok to be mad, it was really ok to be scared.

What have you learned from being a mother to special needs children?

To have two boys that are considered disabled has been the most rewarding experience. I feel it has made parenting more rewarding than a "normal" child, milestones that weren't supposed to be made were extra special for Landon and seeing Mason smile and giggle with his little cleft has been amazing. Seeing the way they both see life as so simple makes me realize we as adults make life much harder than it needs to be.

My boys have taught me so much about life, love, and learning. Life is what you make of it; if you never know what you can't do you will be able to do anything. If all you have is love then you really have everything. You don't need anything else to make you happy, as a child or adult.

Just because my boys have (what others see as) something wrong with them doesn't mean they are not perfect to us. We have never acted as if they couldn't do something because of their issue; we tell both our boys they can do anything and be anything. They will NOT be set back because of anything. I want everybody to know that they are normal; they are beautiful and caring children that deserve to be loved like any other child.

I love everything about my boys, their smiles and laughs, the way their eyes light up, their smell, their beautiful fingers and toes, their ears and nose, cute kissable lips, and everything else about them. Landon is one of the most caring little boys I know; he is amazing and gentle with his little brother. Seeing Landon interact with Mason is amazing. I never knew such a strong love until I met my babies!

Thanks so much for sharing your story, Jaime! You are so strong and caring, and your boys are lucky to have such a great mom!