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!

One Year Post-Surgery for Nathan

Tomorrow is a huge milestone for Nathan. It marks one year since he had his cleft palate repair. August 20th will be a day I will never forget. All the emotions going into a surgery are almost overwhelming. You have to make sure they are fasting, you have to get there super early in the morning, you have to pack for the hospital (which was supposed to be only one night but turned into 2 for Nathan), and you have to think about the moment when you will send your little baby away to the doctors who will be doing a very painful operation.

The holding area is lined with little cribs and beds where curtains separate the patients, each waiting for their doctor or surgeon to come take their child away. Every few minutes you would hear the squeaky wheels of another bed being taken down that long hallway, and hearing parents walk the other direction. I became very emotional each time this happened, but somehow, when they came to take Nathan, I was able to keep my composure. I knew he would be okay.

They sent us to a room in the hospital where everyone sits and waits, and stares at a large screen with numbers and colored codes indicating the progress of each patients' surgery. And the longer it takes, the more nervous we became. Nathan's entire surgery was only supposed to be 2 hours. But when it went past 2, then 2 1/2, we began to wonder if everything was going okay. But suddenly we saw the surgeon and his team come out, ready to tell us that it went well and that we could see our baby.

I will never forget how Nathan looked right after surgery. His poor little swollen mouth and face, and the oxygen mask, and his grogginess. I could tell he was in so much pain. He couldn't even close his mouth. After we were moved into a recovery room, I was able to try feeding him with his bottles, and though he was very hungry, he couldn't really try because of how much pain he was in. That night was awful, trying to regulate his medication with the nurses, and then being woken up surrounded by a huge team of doctors around 6 am. I wasn't even sure how long I slept! They wanted to find out how much he was eating, and I told them, nothing! And then they explained exactly how the palate was repaired, and I was heartbroken for him all over again. The surgeon never explained in detail what they did, and now that I knew, I could not even begin to imagine the amount of pain Nathan was experiencing.

We got through those 2 nights and three days in the hospital, somehow. And the recovery, too. And as the months went on, Nathan just packed on the pounds! He was born at 8 lbs 15 oz, and at 9 months old when he had the surgery, he was only 15 pounds, the 1st percentile for his weight. He is now over 25 pounds and in the 60th percentile. So in a year he's gained 10 pounds and looks as chunky as ever. He's learning new words every day. He charms everyone who comes in contact with him. I am so glad we have him in our family.

He might have a few more bumps in the road. Possibly another surgery to fix the small hole that is still healing on his palate. We don't know how many more surgeries he will need. And his chromosome 22 duplication means he is at risk for developmental delays. So things are up in the air with him right now. But from what I can tell, he is a very average, stubborn, determined little toddler who amazes me with his cleverness and cuteness. And when I drive by the hospital, I don't get those horrible feelings anymore. We've moved on from that, at least for now. But August 20th, 2013 will always stay in my memory.

Julianna, Part 13: We're all caught up!

So in the last post I talked about how Julianna got a 1:1 aide written into her IEP. This was a huge milestone as far as what I have been able to accomplish for her in the school setting. I can't say enough good things about 1:1 aides, and especially the one she was assigned to, and still has now. Her aide has been hard-working, motivating, patient, reliable, responsible, informative, helpful, I could go on and on. Without that aide, Julianna would not be able to attend public school and reap the benefits of being around regular peers who model appropriate social behaviors for her. It also takes a lot of the worry away from me. The first couple of years, I worried about how she would do on her own at school. She doesn't always know where to line up, or follow procedures, or stand up for herself if she were bullied (or something even worse). Having an aide be her "shadow" means someone is always there to stand up for her in those situations, and to give Julianna the tools to improve socially and academically. I feel very fortunate that Julianna is starting her third school year with the same aide who has become such a support to her. She has made great progress in school and because I have things set up for her there, I don't have to worry anymore. I can send her off to school, confident that she will be in good hands. A huge burden lifted for sure.

Now this aide isn't the only person who has been supporting her the last few years. We also have a wonderful respite worker who is provided by the regional center who has been helping me in the home, 30 hours a month, for almost 3 years. What we know about Julianna is she will behave very well in school, and then come home and unleash all that pent up frustration and anxiety on the family, usually in the form of major temper tantrums. This means we have been living with temper tantrums for almost 9 years (she started around 2 years old). I have other demands on my time and cannot always spend that one on one time that she desparately needs and thrives on. Our respite worker can be there for her in that way to engage her in activities to keep her focused and happy. The tantrums still come, and we are working on it, but it is such a relief to know that I also have someone in the home to help as well for 30 hours a month.

And I can't stop there, either. We also just began ABA therapy again a few weeks ago. She will be receiving 9 hours a week, MWF from 2-5, where someone works one on one with her during that time, teaching her life skills, social skills, coping skills, and whatever else she needs. Through this program, I also receive parent training on how to cope with the tantrums and behaviors that are never seen by the therapist because Julianna is so good at hiding them. Just yesterday, a therapist came over to talk with just me about what has been going on in the last few weeks with her, and we were able to come up with great ideas on how to approach these problem behaviors. And her new therapist that works one on one is just wonderful! She is positive, outgoing, and fun, something that Julianna really loves. She always has great toys and games and crafts that she is bringing over to keep Julianna engaged. Again, a huge stress relief for me, because she gets even more 1:1 time.

We are also seeing a psychologist a few times a month, and she is helping us figure out how to approach the problem behaviors as well. She introduced us to the 1,2,3 Magic behavior program, which is so simple to implement, and just started using officially on Wednesday. When my older kids talk back, or fight, or hit, or whine, etc, I say, "That's 1." If they persist, "That's 2." And if it still doesn't stop, "That's 3, time out" (1 minute for each year of life.) We have been doing the 1,2,3 for her tantrums and hand biting, and so far, it is working. But I know it will not be easy. The biggest part of this program is to not show emotion when you are disciplining, and that is really hard for me. Because of the struggles I have with the kids, I often feel angry and bitter, something I need to work on as well. Those emotions are always at the surface, waiting to boil over to the family. When I am faced with tantrum after tantrum (and if you don't have a child with autism, you don't know how bad tantrums can be) my patience is pretty much gone most of the time. But showing anger doesn't solve anything. So I am trying to be strong and in control right now!

We are also making a chart for her to reward her when she asks for help instead of biting and tantruming. Whenever she can't do something, she will automatically resort to a tantrum. So not only are we doing the 1,2,3, we are encouraging her to use her words and tell us what she needs first, and she will be rewarded with stickers on a chart. This will not be easy for her, but I have gone long enough with these behaviors in our home. So I am going to stick to this plan try my best to help her stop these behaviors once and for all!

She is also still doing the GFCF diet and doing so well on it. At her age, she totally understands what she can and can't have, and has never really complained either. Last night, we went with our respite worker to McDonald's for a treat after Julianna's horseback riding lessons (which she is getting really good at, by the way,) and even though everyone else got ice cream, she was content with her french fries, and when we got home, I made her some chocolate almond milk. We have made the diet work just fine even though the rest of us are not on it. Our goal is to get to her 11th birthday in December, which will be 6 months. If we think she has improved enough to continue the diet indefinitely, we will do that.

What I have learned since being her mom is that each new phase presents challenges. Once I get through something difficult, another problem presents itself. It is typical of any child, actually, and in many ways, it is a blessing, because it is helping me learn new skills and tools that I can share with other moms who might be struggling. I treat Julianna just like our other kids and include her in everything we do as a family. She is going to learn what she will learn in school, and in the home, and we will take her as far as we possibly can. I don't know what the future holds, but I keep holding on to the hope that she will be able to have the same opportunities as anyone else. And if not, that's okay too. We will be there for her, no matter what.

Nathan's new specialist: speech therapist

I am still amazed at all I have been through with my little guy Nathan in just 20 short months. Since his birth, he has been seeing doctors at 4 different offices on a regular basis (this includes his pediatrician.) Now we get to add a fifth to the list: speech therapy.

When his ear tubes mysteriously fell out sometime around the beginning of this year, his ENT (ear, nose, throat) doctor recommended he begin speech therapy as soon as possible. In fact, she wondered why he hadn't been receiving it all this time. I told her he was seeing one as part of the craniofacial team, but all she did was make sure he was drinking correctly from the bottle, and listened for sounds he was making as a baby. Because the visits were not regular, (only every 4 months) it was not really speech therapy. So we took our ENT's advice and put in the request.

His evaluation about 6 weeks ago went very well. They said he would qualify because he needs help pronouncing certain sounds correctly, and help feeding out of a cup. I was told he would need to come twice a week for therapy. And this completely overwhelmed me. I was already about to begin 9 hours a week of therapy after school for Julianna, and Nathan already had someone coming here once a week for his early start help, and not to mention all the other appointments that fill up each month for Nathan that involve driving about 30 minutes one way (we average 2-3 visits). This therapy office is another 30 minutes in the opposite direction. Could I really add in another doctor at this point?

But then I started to think about how much he would benefit from this therapy, almost more than any other thing he's doing. He would be getting regular help from a professional, and I was also interested to see how they did speech therapy. Julianna has received it in school since she was 3, and I've never really sat in a therapy session more than once or twice, so I don't know much about it. I knew that in the long run, the drive and sacrifice of time (and most likely his naps) would be worth it.

So our Utah trip delayed his therapy a bit, and finally we went for the first time yesterday, the 5th. This therapist was so animated and fun, and had him sit in a high chair, and showed him some toys, and really engaged him in his speech. I would say he learned to imitate at least 3 words in just one half hour. She would hold his mouth at certain times to help him use his lips to pronounce certain words appropriately, and she started training him on the Avent 360 sippy cup. As I watched my little boy engage with this complete stranger, I suddenly felt tears come to my eyes, thinking about how far we had come already, and that this new little journey for him would be so beneficial to him. I felt overcome with gratitude, thinking about how much I have been guided in getting him the right help since his birth, and how overwhelmingly helpful every single doctor has been so far. What would I do without these amazing people who care so much about my own child and will work hard to improve his quality of life.

This all may sound silly to say, considering he's not even 2 yet! But sitting there in that little therapy room really gave me a chance to reflect, and to realize how blessed I am with Nathan. He is doing so well, and he has the cutest personality and smile, and I just know he will go so far in life despite his little birth defect and chromosome duplication. The more doctors, the better, at this point! Yes, it's tiring and stressful to be going here and there all the time, but Nathan is worth it! I would do anything and go anywhere to help him achieve his potential. We're going to get there, one little step at a time.