A New Phase: Burn Out

On my blog, I have written about the different phases I went through while raising Julianna, and then with Blake and Nathan. Once I was caught up to the present, I blogged about different events or thoughts that have come to my mind. And now that I have been writing on this blog for a little over a year now, I have noticed that in the past few months, now that I can look back on them, I have entered a new phase in relation to motherhood as a whole, and that can be summed up in two words: Burn Out.

I have been a mom for over 11 years now, and a mother to 3 kids for over 2 years. Each child has brought his or her own set of challenges that have tested me to my limits and pushed me to do things that I never imagined I would need to do. And I did them, all of them, every single thing my children needed over the years, no questions asked. I took them to doctors and specialists, to surgeries and evaluations. I've spent countless hours on the phone fighting for help for Julianna, many scary nights awake holding Blake as he flushed and blistered, and cried myself to sleep some nights worrying about the pain Nathan was in after his surgery. In just 11 years, I've seen and done so many things, and for certain it has changed me as a person. But I think 11 years has done me in, and it's not like I can resign or call it quits. I've hit a wall, and that wall has knocked me out cold.

I'm tired of all the behaviors that have evolved over the years with Julianna. Yes, she has been able to change in some ways, but there are always new things that we have to deal with. It gets better in some ways, but never all the way better, and it never will. Now I love Julianna and am so proud of what she has done over the years and the ways she has grown, but as her mother, I get to see the worst in her, and she gets to see the worst in me. All her teachers and therapists have always said how wonderfully behaved she is, and that they have never seen her tantrum. Me, it's almost always tantrums, or repetitive behaviors that often drive our entire family crazy. I've been walking on eggshells for a very long time, and do you know what that does to a person? Well, I'm starting to find out. At some point you just can't keep walking on those eggshells, and you instead let them crush beneath your feet. You let go, you give in to the pressure. You break, just like the shells. You just can't do it anymore. I am becoming broken, and unlike eggshells, I know I can be fixed and put back together again. I know I can climb over this wall, but it's not going to be easy. I just need to find that strength that I had all those years ago that kept me going. I need to find it, and soon.

Tonight was one of those nights where I was stomping on those eggshells. Blake was upset that I wasn't rushing to the store to buy him a basketball, because somehow he thought I said I was going to. So he followed me around the house asking, "I want my basketball. I want my basketball." Julianna has this thing where whenever she asks anyone a question, it has to be answered, and she won't stop asking. When a question is directed at Blake, it usually means we get to hear Julianna say "Blake!" about 4 dozen times, and he still won't answer, because he's tired of having to answer all the questions, too. This means I have to try forcing him to answer, and tonight he wouldn't do it. He said his name wasn't Blake anymore. And this is at almost 9:30, when my patience is more than gone. So I finally got Blake to answer Julianna's oh-so-important question, and all she asks is, "Blake, are you mad at me?" And this infuriates me, because she asks this question to us ALL DAY LONG NOW. It's her new question of choice. She starts to tantrum and I don't want her to wake up Nathan, so I have to drag her to another part of the house. I let her work it out, and before I know it, I can feel the tears burning my eyes as I realize once again, this is my life. This is what I have to deal with on a daily basis. How much longer will I have to deal with this? I have no idea! But I am past the point where I can deal with situations like this in a civilized manner, because like I said before, I am burned out. I'm crushing the eggshells, not tiptoeing around them.

Recently one of the people from Julianna's ABA therapy group came to talk. She comes to ask how things are going, and I love it, because this is when I can vent about Julianna's behaviors that they never see because she is so good around them. I started telling her about all the little things Julianna says and does, and how I have come up with ways to prevent them from happening, when possible, and she remarked that she was impressed that I had all these little very personalized methods on dealing with them. And suddenly, as I was talking to her, I stopped, and said, "Can you believe I actually have to do all this? I must be going crazy! I can't believe this is my life." But really, my little methods aren't always put into practice lately, because of this burned out phase that I am in. I have great ideas, but don't always put them into practice, because I'm tired of walking on those eggshells.

I know I will get to where I need to be as a mother. I know I can find that strength I once had. Maybe Nathan's crazy toddler phase is adding to the burn out. But right now, I am in the trenches, fighting battles every day, and it seems like there is no end in sight. I guess I need to change my point of view.
And a change of heart.

From the Book of Mormon, in Ether 12:27, it reads, "“My grace is sufficient for all men that humble themselves before me; for if they humble themselves before me, and have faith in me, then will I make weak things become strong unto them.” President Ezra Taft Benson, a former prophet in the LDS church, added to this verse, "What a promise from the Lord! The very source of our troubles can be changed, molded, and formed into a strength and a source of power." I believe in this with all my heart. It's time to get to work, and enter a new phase of motherhood. Time to end the burn out.

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!