A Letter to My Daughter's 1:1 Aide

Tonight I lay in bed, after saying my prayers, thinking about all the things I'm grateful for, things I might need help with, and one single image keeps coming back to me: watching my daughter with intellectual disability and autism walk to my car every day in the flood of middle school students pouring out of the gate. As I search for that red, curly hair, I also search for you--the one person who makes it possible for my daughter to attend school at all--her aide. The image of my daughter walking to the car, surrounded by her peers--but feeling safe because you are there with her. Now that you have begun your fourth year as her aide, I am feeling more and more blessed that you have always been there for her. How did I get so lucky?

I remember how it was before, how I used to worry endlessly about sending my daughter to school. I remember observing her in a general education class at the beginning of second grade, feeling helpless because her wonderful resource placement was pulled from under her during the summer break. My only option was to have her attend a special education class, but I knew that wasn't for her. I also knew, while watching you sit there in that large class, all alone, afraid to look up from your desk, rocking your body back and forth, that sending you to school was doing more harm than good. So by the time Winter break came, I had made arrangements to homeschool you. After several painstaking IEPs, you and I were on a new path together, and I couldn't be more excited. Little did I know that it would be short-lived. Just 3 months into our homeschool journey, I became pregnant with our third child, and I knew for certain that there was no way I could give you the attention you needed to thrive once the baby came. But what choice did I have?

I remember taking you with me to observe the sped classes before the school year ended, and meeting with one of the teachers who reassured me that new classes were going to be formed shortly after the next school began. I knew none of the classes would be right, but I also knew I couldn't homeschool you with a newborn. So I had to trust in the teacher's words.

Your third grade year began, and once again, I found myself observing you in your new classroom setting, this time very pregnant and uncomfortable. The class was much lower than your level, but I couldn't send you to a general education class, either. I thought about how you came alive when I worked one on one with you, and wondered if obtaining a 1:1 aide would even be possible. No, definitely not, I reasoned. All I heard was that they were a nightmare to get, but as the weeks went by, and no new class was formed for higher kids like you despite my many calls to the district, I knew the aide was the answer.

So I brought it up to your teacher/case carrier. No, I demanded--after all, I'm your biggest advocate. I said Julianna needs a 1:1 aide so she can go to a regular classroom. She doesn't like the special education class. She deserves a chance to learn with regular kids. To my surprise, this angel of a teacher agreed with me, and did everything in her power to help--even things that could mean getting fired. She even "assigned" one of her aides to work directly with my daughter to have more evidence that an aide was needed. I still remember her words: "I know exactly who should work with your daughter." And it was you--and as a very pregnant mom I got to know you in those weeks of anticipation for the meeting. I hoped so much that the district would allow you to be her "helper." I saw how much it was benefiting her already, and I finally was beginning to have peace of mind.

The day of the meeting came, where a team of adults would determine my daughter's fate, and though I had been to many IEP meetings before, this one had to be the most nervewracking. We sat around that table, and the special education director read through a series of questions that would either prove or disprove my request. By the end, it was decided that without a doubt, she would get the aide. Literally weeks before my baby was to be born, I finally was at ease with my daughter's placement. No more worrying about sending her to school--she would have someone to help her with not just schoolwork, but with socializing, playing on the playground, being brave, opening a juice box, tying her shoes, and all those other things that did not come natural to her. She was a "mom" to her when I couldn't be.

Some of the directors tried to warn me before signing the IEP that giving my daughter an aide was the most restrictive placement, and the goal is usually to make it the least restrictive. So I tried to explain that for her, it was quite the opposite--that school itself was restrictive for her, but giving her an aide helped her become free to attend. Yes, it might hurt the bottom line for the district, but isn't education about giving every child a chance?

And you are still there, her wonderful aide. You have become a second mother to my daughter. You know her probably better than I do. You come to my car to pick her up every morning, and without hesitation, she gets out of the car and goes to you--that can't be said for many other people. You give her confidence to do things she wouldn't otherwise have confidence in. You ease her fears and anxieties just as mine are eased.

You were there on the first day of every school year, even when it meant leaving your own little boy behind. You were there when you became pregnant with your second child, and my daughter missed you when you were on maternity leave. You came to a private orientation with the vice principal of the middle school before the year started, and as the vice principal mentioned certain things about the coming year, you were the first to say what would work or what wouldn't work for my daughter. You know her so well, that sometimes I'm jealous, but in a very good way. I'm glad--so very, very glad--she has you.

You were there on the first day of middle school, bright and early at 7:30 am, even though your own son was going to his very first day of kindergarten an hour later. You knew how important it was to be there for my daughter on her first day of a brand new school. You could have told me that you wanted to be there to see your son, and I would have understood. But you didn't--you came to be there for Julianna. I hope you know how much that means to me, and to her. I hope you know how much that means you love my daughter and care about her success just as much as I do. Again, how did I get so lucky?

I don't know how much longer you will be with her. I don't know if the district will try to say that she's doing so well in school and doesn't need an aide--much like taking medicine away from a sick person who needs the medicine--and if there will ever be a fight to keep you. You better believe I'll be willing to fight for you. School would not be possible without you there.

And so as I sit in my car, waiting to see that redhead walking side by side with her faithful aide, I want you to know all these things that I could never say in person. I mean every single word. Without you, I wouldn't have as much hope in my daughter's future. And as I look to that future, I imagine my daughter walking across a stage at middle school graduation, and then high school graduation, and I know you will be there cheering her on. Maybe you'll even walk across that stage with her--or maybe you'll tell her to do it on her own, and she will, because she trusts you. I trust you.

Thanks for being there. Thanks for being one of the biggest parts of my daughter's educational career. Thanks for the tears you showed at many awards assemblies in elementary school because you wished that my daughter were up there getting awards like the other kids--after all, you know how hard she has to work--much harder than most. Thanks for helping her become who she is now, for helping her grow in ways that would not have been possible. And thanks for not giving up, even though I'm sure there were times when you wanted to. My daughter might not be able to express how she feels, but I can, and you have gone above and beyond your duties as an aide, because you are much more than that now.

How A Diagnosis Can Seem Like Being "Typecast"

Is sharing a diagnosis a good thing? Or is it better to let people figure it out? Does the diagnosis matter all the time? What does sharing a diagnosis do, exactly?

I have trouble with this often, knowing what to tell people when they encounter my 12-year-old daughter. Most everyone that knows our family is aware that she has autism--naturally, word gets out. But when we are out in public, and something sets her off (which is becoming more and more rare), I have been known to tell people around me that she has autism. In fact, a number of years ago in a Wal-Mart line while she was having a horrible tantrum and people all around me were staring, I blurted out, "She has autism, OKAY???" That seems to set people straight again, since most everyone in society has at least heard of autism, or knows something about it. (There are plenty of parents writing about it, and self-advocates, too. And that's a good thing. Keep writing and sharing.)

But you know what? I hate that I have to use her diagnosis as an excuse for her behavior, or to explain her behavior. Because once the word has been applied to her--once people have been told she has autism, she has, in a sense, been "typecast." It changes how people view her and interact with her. It just changes everything.

The word "typecast" makes me think of certain actors in Hollywood. Those poor children who grew up playing the characters from Harry Potter--talk about being drawn into a box. Sure, some have broken out and played other roles, but they will always be Harry, Hermione, and Ron. And what about Lord of the Rings? Elijah Wood and Sean Astin are hobbits, forever. Steve Urkel from "Family Matters?" Screech from "Saved by the Bell?" Will we ever truly see these actors as anything other than what they have portrayed for so long on the screen? This typecast thing must be pretty tough as an actor.

But back to us regular people. What about those kids with "labels?" Haven't we essentially done the same with them? When I tell a person my daughter has autism, is she then written off as someone with autism? Someone who automatically, indefinitely has no capability to be a friend to someone, to have fun with, to talk to? Someone who is so different that there's no point in trying to connect or relate? This is the danger that I see behind sharing the diagnosis--the person being told the diagnosis sets limits on the individual based on the knowledge they have of that particular diagnosis. The individual has been typecast, prescribed a specific description of characteristics, and only very few will actually try breaking through the boundaries of so-called "definition" to discover what lies inside that box.

Those few are, of course, parents. Family members. Close friends. Teachers. The ones who don't even see the diagnosis anymore, but the child or individual for who he or she is. They see potential, abilities, no limits. They see what others do not see, because they love. Love can also be spelled TIME. They've had time to love. "Perfect love casteth out all fear." (1 John 4:18). And maybe the root of typecasting is fear, after all. Fear of what a person does not understand about a disability or disease. It's easier to set a boundary based on what you know, rather than digging deeper. Maybe if we treated all people out of love there would never be a need to typecast. Or maybe the diagnosis wouldn't be a boundary, but a bridge to gain new understanding--a bridge that leads to a starting point of a beautiful relationship, that leads to love.

Just imagine if we viewed others out of love and not fear. I wouldn't have to fear what others would think when I explain that my daughter has autism. But you know what, there's a good chance that I wouldn't even have to mention the diagnosis at all, because we are all different and diverse, and with love as our lens, it wouldn't matter what a child or person might be faced with. Love would conquer all.

Those poor typecast actors trying to break through what others see them as. Daniel Radcliffe has certainly proven he can be more than Harry Potter. Dustin Diamond has pursued other avenues as well. And who could forget the episode when Steve Urkel ditches the nerd-clothes and plays another character, one much more desirable and good-looking? Is it possible that those kids with "labels" can be viewed differently, too? Can they be viewed as more than their diagnosis by those outside their close-knit circle? I think so. I know so. Sharing the diagnosis might change things, but it shouldn't limit things--only open new doors of understanding. As long as love is part of the equation, anything is possible.

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Julianna Gives a Talk in Church

Church is a big part of our lives. Our family belongs to the Church of Jesus Christ of Latter-day Saints. My husband and I were both born and raised in this religion, we married in the San Diego Temple after meeting at Brigham Young University, and now we raise our "special reds" in Southern California. Such a typical Mormon story, right?

The LDS/Mormon church is more than just a Sunday thing--we live it every day. We read scriptures with our kids and say prayers--we have since they were born. We have Family Home Evening every Monday night (a family time where we share a spiritual lesson and enjoy being together). Joel and I serve in church callings, sometimes very demanding ones. Our kids are blessed to attend their primary classes and boy scouts and activity days and fun primary activities. We have lived here since Joel graduated from BYU 11 years ago. This is our home. The ward family, or congregation that we attend, has seen my children grow up. They have helped me when I've struggled, and believe me, it's been a lot. So in short, being a member of this church is our livelihood and our strength. I know I haven't talked about it much here, but I owe so much to my religion and beliefs for my courage and hope in the face of so many trials.

When Julianna turned 12 years old in December, I was given a new calling: Young Women Secretary. This means I serve with the Young Women Presidency in our ward, and attend Sunday meetings and events for the Young Women, aged 12-18. It has been so wonderful watching Julianna experience mutual (Wednesday night activities), Personal Progress (a goal-setting program for Young Women) and the Young Women class on Sundays (the third hour of church.)

But there was one thing I wasn't planning for, or didn't even think about, after she turned 12: the fact that 12 year olds have the opportunity to give talks in church. Would the Bishopric (leaders or pastors of the ward/congregation) ask her to give a talk? Or would they assume that she couldn't? But can she even give a talk? This is Julianna, the girl who has never gone up to bear her testimony on Fast Sunday (every first Sunday of the month, the ward members fast and during Sacrament meeting, have the opportunity to bear their testimony). So I just waited to see if it would happen, and lo and behold, one Sunday last month, a member of the Bishopric approached my husband and asked if Julianna would be willing to give a talk. He came home to tell me.

Honestly, my first thought? Complete and total fear. How could I even possibly help her gain the courage to get up in front of over 100 people when she's never done it before? Luckily, we had 3 weeks advance notice, but we weren't given the topic yet, so the first week, we talked to Julianna about how she felt. We asked her if she wanted to give a talk, and she shrugged her shoulders and quietly said, yes. She's watched her friends give talks, and this girl truly wants to do whatever her peers are doing. So we went forward, trusting it was the right decision.

In that time, I also let her stand at the pulpit on a Wednesday night. I wanted to make sure she had at least stood there before she gave her talk. She did not want to talk into the microphone, but listened as I did.

Once we got the topic, personal revelation, I set out to write the talk for her. I knew I had to keep the sentences short and to the point. I also knew I had to type in out in larger font, and divide each sentence into separate lines so she could visually read it better. That night, we had our first practice after our family scripture reading. We told her that we were going to practice it every night until she gave her talk. This gave us 10 days to practice, and she was not always agreeable, but we persevered!

A few days into practicing, I noticed that when she read, she would not separate the sentences with a pause, and this made it hard to comprehend what she was saying. So I took a red pencil and drew bold lines between every period and comma as a visual cue for her to stop and pause at those parts. This seemed to help a little bit. I also blacked out some words that I thought weren't necessary--in the end, it was just the right talk for her. The funniest part was she didn't want to start her talk with "Good morning, brothers and sisters," like so many people do. She made me cross it out! Here's a picture of her talk below.

 

About 5 days before her talk was to be given, I decided to start recording her on my phone, and letting her watch it back. Every time, we would notice things to improve. And as it got closer, she really was sounding great! Her rhythm and pacing was perfect, and though her voice was a little soft, the microphone would make up for that. Also, every day since her assignment to speak, in our family prayers, we would pray for her to be able to give this talk.

The big day came, and Joel got home from his morning meetings before church with enough time to give her a Priesthood Blessing. I asked him to do this because I felt like we had to do everything in our power to give Julianna the best chance for success. His blessing of comfort was wonderful, and we left for church, still not knowing what might happen.

When we got there, we sat closer to the front than usual. I asked her if she wanted to sit on the stand until it was her turn to speak, or if she wanted to stay with the family in the pews. The speakers don't talk until after the sacrament is administered, so I wasn't sure if she would want to sit up there alone for close to 30 minutes. Joel suggested that I sit up there with her, so that's what I did. Before I sat down, though, I told the bishopric members that they would probably have to adjust the microphone so it was in the right place for her to be heard clearly, and they would also have to turn up the volume! I told them we had done everything on our part to prepare her, but that I still didn't know if she would do it. They were fine with this, so I sat down with Julianna and waited for the meeting to start.

A brother (man in the ward) sitting up there asked if Julianna was giving a talk, and I said yes. He asked me if I thought she would be brave enough to get up there. In that moment, I had to tell him I wasn't sure, because really, all the practice was great, but you just can't practice giving a talk without taking a leap of faith and doing it. The first time doing something is always hard, and for Julianna, this was going to be a HUGE first. I told him that I really hoped she would do it all by herself.

As we sat there during the sacrament portion of the meeting, I prayed that I could hold back the tears long enough to hear her speak. Being a mom is such an emotional journey, and sitting there with her, it was hard for me to believe that she was old enough to be doing this, and that she was actually willing to. It was really tough to keep my composure.

Finally the sacrament ended, and a member of the Bishopric announced the speakers. He then turned it over to Julianna. She looked at me, and I said, go ahead, you can do it! And I watched as she walked the 10 feet to the pulpit, placed her talk down, and began speaking after the bishopric member adjusted the microphone. I held back the tears as she said every word, more clearly than she ever had in any of our practices. I looked out into the congregation and saw huge smiles and even tears on the faces of the ward members. Julianna gave her talk, all by herself, and I couldn't have been more proud.

When she was done, I walked with her back to where the rest of my family was sitting, tears in my eyes. It was like she grew up in that moment, like she became a young woman. She did something that, 5 years ago if you had asked me, I would have never imagined it possible. But it was possible, and I owe a huge part of this to our faith and prayers, and even the prayers of some of you that read my post on Facebook the night before. I could truly feel your prayers!

It wasn't just prayers, though. It took a lot of work on our part and her part to make this possible. "Faith without works is dead." Without all the practice, Julianna wouldn't have had the courage to do this, either. Prayer and works really do go together. If you show the Lord all that you can do, he will make up the difference. I know for a fact that Julianna was helped as she gave that talk. To me, it was a miracle. She far exceeded our expectations!

When Sacrament meeting was over, I told Julianna that lots of people will want to come tell her what a good job she did, and that she should try to thank them when they do so. Well, it didn't take long before people were gathering around her to congratulate her, and it continued for the remaining two hours of church. I think she was getting overwhelmed by the attention! But I really appreciated all the kind words that were said. And even though she wasn't able to thank you herself with her words, I know she appreciated it, too.

I am so glad that she was given this opportunity. I know it has helped boost her confidence and testimony, and it certainly has helped mine. I have learned, once again, that I can never deny my daughter an opportunity to do anything. Autism does not limit her, it only makes things more challenging. As parents, we have to be willing to help our kids overcome obstacles to reach their potential. What seemed impossible to me before is now possible because of hard work and prayer. I'm so proud of her, and look forward to more opportunities for her to grow as she gets older. Next on the list: girls' camp this summer!  

Interview with Nancy H, Julianna's School Teacher

When I heard that Julianna's amazing teacher, Nancy H., was retiring this year, I knew I needed to sit down with her and ask what she has learned from her impressive teaching career. I have seen amazing progress in Julianna since she's been with Mrs. H., and so appreciate her hard work for those students. During our interview, she also told me that Julianna is now giving her compliments about her clothing, which is a new thing. Almost every day, Julianna will tell Mrs. H. that she likes her clothes--there was one sparkly silver sweater in particular that Julianna liked so much that Mrs. H. said she might give it to Julianna at the end of the year. Thanks so much, Mrs. H., for your diligence and passion as a teacher! You will be missed!

How long have you been teaching? What drew you to the profession?

Total, 38 years. I have wanted to be a teacher since I was little. When I would go to friends' houses, I would play "teacher" with their younger siblings. I thought it was weird when people didn't know what they wanted to do in college, because I always knew what I wanted to do.

What types of classes and students have you taught?

I've done a little of everything--infant care at college campuses--I opened an infant center at UC Riverside. I've taught early childhood education at a community college, and all grades except high school. I've taught headstart programs, regular elementary school classes, and adult classes. But I've always been drawn to the inclusion classes.

Tell me about your own children.

Of my three children, my oldest is very "normal," but did have some minor issues with dyslexia. My son had much worse dyslexia and auditory discrimination issues and was placed in special education classes. This is where I learned to take a stand and defend him and make sure his class settings were right. This is what opened my world to special education. He has disabilities, but he's like any other kid.

What have you learned from doing the inclusion class?

I feel like teachers should accept any child that walks through the door. I make sure to modify the class for every student. To me, there shouldn't be the divisions. Every child deserves to learn, and it's my job as a teacher to adapt my curriculum to reach their learning. When they began doing inclusion classes, I volunteered, because I wanted to prove that it could be done.

I was sent to a inclusion training with another teacher, and I saw that students were helping other students in wheelchairs, and I remember thinking, "YES! Why can't it be that way?" It should be that way! I also learned more about autism, and my eyes were opened. It really is different for every child on the spectrum. I've taught the inclusion class for 5 years, but before that, I was the mainstreaming teacher, because they knew I liked having children from special education sent to my class. I've done that throughout my entire career, actually. This has allowed me to teach many different children.

What do you love about being a teacher?

What I love is sharing that experience when a child or adult gets that "a-ha!" and you see the light go on. I love that I get to be a part of that. Even smaller things, like a child that never takes his jacket off. I tell myself, by the end of the year, that jacket's coming off. When it does, it's like, "Yay! I did it!" The curriculum isn't as big a deal for me, because they can learn math or reading from anyone. It's all about those life-changing moments, when the child might say, "I can't," and then later can say, "I can." It's about the connections.

What do you not like about teaching?

When generalizations are made. I hate that they're separated just by age. I wish they would separate by subject, and have rooms with just writing teachers, and another room for the math, and then another room for being creative. I think more individualized help could be given. I don't like when students are made to fit in a box, or when teachers don't want to teach a certain student. I can feel my patience slipping, and I knew I needed to retire. I make sure to apologize to my students when I snap at them, or warn them if I'm having a groggy day! I like to be real with them.

What is the biggest challenge that teachers face now?

Being asked to do things that we know we can't do. A lot of the curriculum isn't developmentally appropriate, but some is. I love common core, and I've noticed that education cycles around. It's coming back to what we used to do when I first started teaching, where you try different methods to learn the same thing. Before common core, teaching used to be scripted, where all teachers had to teach the same page every day, and you had to move on even if they didn't learn it. It wasn't about mastery--it was more surface teaching. Now that we are doing common core and teaching 10 ways for math concepts, it can feel overwhelming for some students, but it's a change from what we are used to, and it will get better. Common core is helping kids learn more deeply, rather than the surface teaching. The testing has been so challenging, and some problems take 30 minutes to complete, but I think it will get easier. It's more than memorizing--it's finding what makes the connection.

How has being a teacher changed you?

I don’t think being a teacher has changed me. Instead, I think it has made me more aware of the differences in children’s life experiences and family make-up. Some students come to school prepared and ready to go, whereas others need lots of support.  My goal as a teacher is more on the social/emotional development, rather than the academic curriculum.  I feel if students are sound emotionally, then they can learn.  I feel it is my job, my duty, to make sure they feel safe, loved, respected, and nurtured, then true “learning” can take place.

Have you ever wanted to quit? What would you tell new teachers that are struggling?

I have never wanted to “quit.” I just have, over the years, developed new goals or tried new things. If I became bored, I would switch grade levels or incorporate new ideas. I would never “quit” the profession.  Facing retirement is kind of scary to me now.  I would tell new teachers to just hang on-- things will get easier as time passes. Also, to focus on one area each year and strive for as close to perfection as you can get, but also realize that with each class, you need to change and adapt to their individual needs.

What are your feelings about special education in general?

This has been my “baby” for about the last ten years.  I have a special needs child myself (minor disabilities) but a struggle none the less. This gave me a personal connection as to how these students are perceived and treated. I think, as a whole, we have come very far. My child was one of those that did not “fit” into a program. General education moved too fast for him, but special education was too low. It was a struggle. I feel that all students, with the exception of violent behavior issues, should all be placed in general education classrooms, with pull-out services, as needed, on an individual basis. I have had students, however, who are just “overwhelmed” by the size and pace of a general education classroom and benefited from smaller, more tailored programs. This is the main point--individual needs should be met for each and every child.  It should not be determined based on financial reasons.

What is the biggest thing your students have taught you? What do you hope to have taught them?

The biggest thing they have taught me is the diversity of their families. It has made me think before giving assignments so I don’t set them up to fail, meaning, if they do not have a supportive family, or extra funds to spend on projects, I don’t assign them. We do those in class, and I provide the supplies. I never want a child to resent their family because their classmates “have more.” Family is first and should be that way. I hope I have taught them, first of all, that I truly care about them. Next, that anything is possible, that the things that have happened in the past can be changed, that things that are hard can become easier, and that they need to make their dreams come true by working hard and
finding support, whether that support comes from home, school, or their community. NEVER GIVE UP! That seems simple, but for some, it is their hardest obstacle.

Do you have any regrets?

Not really. I tend to think things happen for a reason and the changes I have made throughout my career have happened because they were supposed to. I feel some students have been placed in my class because I have been meant to help them. I have had some real challenges, but they all have had some positive results. There have been students, in the past, where I have feared for their futures or their safety. Those are the hardest to lose contact with. I have wanted to take some home. This is where being a teacher is very difficult--there is only so much we can do.

What legacy do you want to leave as a teacher? What do you want others to remember about you?

When I chose the inclusion class, I always looked at that as my legacy. I knew I was going to be retiring fairly soon, and I wanted to leave that mark, that it can be done, and very easily and successfully done. Don't let disabilities or medical challenges define the child--every child deserves the best they can get, whatever that best is. For some kids, it is a special education class, because it just won't work, but inclusion is worth trying. You make the school fit for the child, you don't make the child fit for the school. And you never leave any child at the door--you welcome them all in, with whatever they bring. That's what a true teacher is to me.

One of my college professors told me that you can be a teacher for 30 years, or you can teach the same thing 30 times. I have been in this profession for 38 years. Hopefully, I have changed and adapted to always meet the needs of my students for 38 years, especially on an emotional level and with positive, memorable, and motivating experiences.

Guest Post: Susan S., Autism and Mastocytosis

Susan S. reached out to me on my facebook page to share her story with all of you. I was happy to do so. Read on to hear about her experience being diagnosed with autism, and also mast cell disease (or mastocytosis). As you can see, she found my page for a reason! Having a child with autism and another with mastocytosis, I'm sure glad she found me, and that she could share her story.

I was 33 when I finally received my autism diagnosis. There were just a lot of things that led up to it. I always knew I was different. So did my mom. But getting a diagnosis in the 80's was probably harder than pulling teeth from a crocodile.

As for how it made me feel, at first I was like WHO AM I? Then as I learned more about it, I realized a lot of things suddenly made sense that didn't make sense before and I came to accept it as part of who I am.

Symptoms.... I call them signs. There was the speech delay, the delayed walking, just the lack of truly functional verbal communication, the social awkwardness, the desire to fit in and belong and have friends but the inability to actually do so. Did we suspect autism? Not in the beginning because we truly did not have the information we now have.

My challenges: I need routine. A break in routine can throw me off. The weather changing can throw me off. Too much noise or color or texture can throw me off. It's like living on a roller coaster.

My blessings: Just being able to know more about why I am different from others. It helps me to know there is a reason. Plus I feel more connected to God and to nature as well. I feel like autism gives me a unique perspective of the world that others lack. I am able to see more of the beauty of the world.

Other challenges I have are with regard to being able to get and keep a job. I somehow can practice an interview and do fine, but when I get into the real interview, I flub up. I wish that I could have someone do the interview for me in place of me.

In terms of helping others understand autism, it has not been easy, but the biggest thing I think has been teaching them that autism never goes away and as such, no one should be aging out of services and programs for autistics.

I also use a lot of identity-first language. I want people to know that's okay. In my advocacy for autism, I emphasis that adults still need access just as much as children and that we need early intervention and diagnosis. One of the biggest success stories in my advocacy so far has to be the fact that my state autism agency finally lifted the age cap on tennis clinics making it possible for more to be able to attend and one of the individuals to stay with it. One of the boys loves it so much but he was turning into an adult and aging out. It made no sense for that to happen.

I also discovered I have mast cell disease. I will be honest, we are still in the early testing stages, but all these years of losing immunoglobulins and being allergic but not having my IgEs agree that I was allergic now make more sense. The allergist was testing for venom allergy due to some concerns we had raised in clinic about my having been stung by a wasp the year before. And when he tested it, he also tested the serum tryptase level. It came back slightly elevated. So he said he wanted to test it again. Again, it came back slightly elevated but higher than the first time. But one of my doctors took the leap and started me on cromolyn sodium oral solution while he looks into what biopsy we need to do for me, and so far it is helping a lot, especially with my gut issues. That's what was impacted the most - my gut.

My daily life has gone from constantly having to interrupt meals to find a restroom and from constantly having to be in the restroom to being run by a strict medication schedule, but I am going to stick it out with that medicine because for the first time in a long time, I am not having to see the restroom so much (at least with regard to the gut, the bladder is a different issue). What I have learned is that a lot of systems can be affected. It's more than just skin, but can also be systemic. And never rely on what you think you knew about allergies either. One day, I can literally have no issues, but the next be all itchy and tongue ulcers.... It's a long journey though, and I have only just begun with the mast cells.

Another thing, and this is kind of the perplexing thing is that both mast cell disease and immune deficiency are pretty rare and somehow I have both. They tend to go in equal but opposite directions. I'm no longer just a zebra. I'm a zebra-corn! (Zebra/unicorn)

One thing for people to know about autism? That's a hard one, but maybe I would just want them to have a simple understanding. So, one thing about autism is this: Being autistic is like being a Mac computer in a PC world. We eventually do the same tasks, but we take different routes to get them done. One thing about mast cell disease: Fight. Do not let a doctor say to you that they can do nothing for you or that they refuse to do anything for you. While my state has no specialist, there is a specialist they can communicate with. So fight.

To All Mothers of Special Needs Children on Mother's Day: I Know How You Feel

Being a mom is nothing like I expected it would be, but I wouldn't change it. What I have learned as a mom has transformed me into a stronger, more confident person. But motherhood is more than what I've learned--it's what I've felt. Motherhood has brought out more feelings, more emotion, than I ever could have experienced otherwise. I have three very special children: a child on the autism spectrum, a child with a rare blood disorder, and a child born with a birth defect. This Mother's Day, I want to write a tribute to all those moms of special needs children, because even though our challenges have all been unique, I feel you.

I know what it feels like to wonder why your child isn't hitting milestones, and to wonder if you didn't do enough to help your child reach them.

I know what it feels like when you wish you could do more for your child, but also feel like you're not doing enough.

I know what it feels like to compare your child to others, even though you know you shouldn't.

I know what it feels like to be afraid of the behaviors your child is displaying, and wanting to hide from the world. Fear is a powerful emotion.

I know what it feels like when your child gets stares and whispers in public. It hurts--so much that it often ends in tears.

I know what it feels like to take your child to doctor after doctor, hoping you will get the answer this time, but also secretly hoping you won't, because you don't want your life to change, or your child's future to be different.

I know what it feels like to sit in waiting rooms at doctor's offices, looking around at all the other parents like you with special children, and realizing that this is my new life, my new world.

I know what it feels like to hear a doctor give your child a diagnosis, and having your life change in an instant.

I know what it feels like to cry yourself to sleep at night, wishing you didn't have to face all these challenges with your child, wishing you could take it all away and just have a "normal" life.

I know what it feels like to have your hope taken away from you.

I know what it feels like to be on the phone--a LOT.

I know what it feels like to have no one understand your situation.

I know what it feels like to send your child off to school, and hope and pray they have a good day.

I know what it feels like to have a child with mysterious and frightening symptoms--so mysterious that your own pediatrician can't tell you what it is--the helplessness.

I know what it feels like to have an out of control household--so chaotic that you often surrender your desire for any control at all, because nothing you do works.

I know what it feels like to have a baby whisked away from you right after birth for testing, to be brought to the ICU because something is wrong. All you want to do is hold your new baby, but you can't.

I know what it feels like to wait for your baby to be observed, and watch the hours tick by, having no idea what could be going on.

I know what it feels like to experience uncontrollable guilt after hearing your child has a birth defect, or any other illness or disorder. What did I do wrong? What did I not do better?

I know what it feels like to have your child go through surgery. It hurts to see your child suffer.

I know what it feels like to be tired--physically, emotionally, and mentally--so much that your body hurts, and you wonder how you will possibly make it to tomorrow. But you do.

But you know what? Even with all the hard things us special needs moms go through, I also know what it feels like when you see your baby smile for the first time.

I know what it feels like when your child does reach that important milestone--even if it wasn't accomplished on the bell curve for "typical" children.

I know what it feels like to suddenly see your child for who they are--the moment when their diagnosis doesn't matter anymore. It's a liberating feeling.

I know what it feels like when your child achieves a new skill that took days, weeks, months, maybe even years to reach, and knowing that all that hard work really was making a difference. You just couldn't see it or believe it until now.

I know what it feels like when your child makes friends at school--real friends. You feel on top of the world.

I know what it feels like to fight for your child--something you didn't know you could do before.

I know what it feels like to see this motherhood thing for what it really is--a selfless path of learning and self-discovery through the eyes of your child--an opportunity to live with a love so strong that it's indescribable. No challenge, no disability, no health issue can take that feeling away.

Maybe your motherhood story wasn't what you expected, either. You are strong even if you don't feel like you are, because you are doing something right now to help your child achieve their greatest potential. Yes, it may cause you to feel weak and tired from all the extra tasks required, but you are already strong because you are a mother.

To all the moms of special needs children, I salute you and celebrate you this Mother's Day. You are doing a great job. And remember, you are not alone. I know how you feel, just like many others like me do.

Transatlantic Tuesdays: Achieving the Impossible

#TransatlanticTuesdays is a collaboration between Maxine (in the UK) who blogs at Down in front, please, and me (in the US) - sharing our journeys in the form of letters to one another.
Links to play catch up are at the end of this post.

_____________________

 

 

Dear Maxine,

 

Well, life has been busy for me, and I thank you once again for being patient. Now that I've gotten through one of my bigger hurdles as a blogger/writer, I can go back to the norm.

 

Of course, I had to reread your letter, and of course each one you write brings both a smile to my face and a new perspective to my eyes. I just love your style, lady. Your writing style, that is.

 

I love that you never feel like you've hit a wall, but that you are running along it and enjoying the view. This means life hasn't smacked you in the face--you're careful and make sure to watch the signs and hazards. Similar to your recent sharing of the marathon you are training for--I wish you the best of luck!

 

Now, you asked me this question:

I'm curious to know what was the one success any of your kids has had which has surprised you the most? Is there anything you didn't expect from any of them and then they've gone and done it and you thought 'whoa, wasn't expecting that!'

So, I made sure to blow those egg shells out of my path before I set out to tell you the most amazing story ever, and keep in mind, I have three children. They have all accomplished great things in their short lifetimes, but what I always go back to, time and again, is when my daughter learned to ride a bike, back in December of 2012.

 

I had just given birth to my third baby, born with a cleft palate. I was adjusting to pumping for him, using a syringe to feed him while he sucked on a pacifier, and basically doing the things that moms of newborns do--up at all hours of the night, feeling pretty frumpy, and living in survival mode.

 

The winter break came, and since my husband is a teacher, he also gets the 3 weeks off. Julianna had just turned 9, Blake, our other son, 6. We knew he was ready to learn to ride a bike, and talked about doing it during the break since we'd have more time to help him. Well, in reality, it would be all on my husband, since I was very busy with a newborn. So we planned to do this right after visiting with family on Christmas day.

 

And then Joel, my husband, posed the question to me: "Do you think we should teach Julianna, too?"

 

I'm embarrassed to admit that I thought Julianna wouldn't be able to learn. I told him this, and said it would probably be too hard, and not even worth trying. She lacked the coordination, balance, and muscle tone/motor skills to ride a bike. Her sensory issues, to me, would not even make it possible, and I even started looking into other options for her, like some type of tandem bike for older children. When you think about it, there are many steps to riding a bike--knowing how to push off to start riding the bike, keeping your balance on two wheels, pedaling to keep the bike going, using the handlebars to turn when needed, and stopping when needed. Too many steps usually meant too hard to learn for someone like her.

 

But my husband wouldn't accept that answer. "We have to try, at least!" he said.

 

So we removed the kids' training wheels, packed the bikes in our car, and headed to the church parking lot. I walked with my newborn in the stroller while Joel worked with the kids. By day 1, Blake had learned to ride. We expected this. He was loving his new freedom. But Julianna needed more time. Day 2, 3, 4 turned into a new week. She was making progress, but whenever she couldn't do it, and would fall down, she would get very upset, and want to give up.

 

Since Blake was riding independently now, Joel had Julianna all to herself. He had her go down little ramps to help her start to pedal. He held her seat. He ran with he as she rode. He did all the things a dad does when helping their child to learn. It wasn't until week 3, near the end of the winter break, that she did it. It all clicked! Her body was able to maneuver the bike and she was riding all on her own. I saw a change in her that was miraculous to me! She could do something for herself--something BIG. She felt accomplished. I'm sure I cried. To me, it was one of the best moments, and I owe it to my husband for not giving up.

 

Now one of our favorite things to do is go on bike rides with our family. It makes me feel like we are a normal, typical family (even though we are far from it). It gives Julianna a sense of independence that she can't have in other areas of her life (at least not yet.) And the whole experience has taught me that autism does not mean anything is off limits--EVERYTHING is worth trying! Potential is limitless, and if it doesn't work out, then that's okay, too! Trying is better than assuming something is impossible.

 

And so, Maxine, I turn it over to you now, and leave you with this question: 

 

Since you will be running a marathon this Saturday, how does this event compare to your experience as a mom?

 

Perhaps this will give you food for thought as you run 26.2 miles!

 

Sincerely,

 

Kera

______________


Transatlantic Tuesdays  |  Archive
02 Feb 2016  |  http://downinfrontplease.blogspot.co.uk/2016/02/transatlantic-tuesday-letters-from.html

02 Feb 2016  |  http://thespecialreds.blogspot.co.uk/2016/02/transatlantic-tuesdays-letters-from.html

09 Feb 2016  |  http://downinfrontplease.blogspot.co.uk/2016/02/no-but-i-have-son.html

16 Feb 2016  |  http://thespecialreds.blogspot.co.uk/2016/02/transatlantic-tuesdays-4-take-high-road.html

23 Feb 2016  |  http://downinfrontplease.blogspot.co.uk/2016/02/pride-of-my-pride-transatlantictuesdays.html

01 Mar 2016  |  http://thespecialreds.blogspot.co.uk/2016/03/transatlantic-tuesdays-hardest-moment.html

08 Mar 2016  |  http://downinfrontplease.blogspot.co.uk/2016/03/life-at-speed-of-rukai.html
22 Mar 2016  |  http://www.thespecialreds.com/2016/03/transatlantic-tuesdays-walking-on.html

29 Mar 2016  |  http://downinfrontplease.blogspot.co.uk/2016/03/running-wall-transatlantictuesdays.html

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Guest Post for World Autism Awareness Day: Derek's Story, by Nicole C.

 

1. What was your pregnancy and delivery like with your child? Were there any complications?

My pregnancy with Derek was uneventful. It was very similar to my pregnancy with my older son. The only thing that was notable was that he wasn’t as active as his brother. He was born 5 days before his due date via repeat cesarean after a failed induction. The induction wasn’t for any medical reasons. It just so happened that I was due the Monday after Thanksgiving, and my husband’s company was shutting down for the week of Thanksgiving. Vacation days being sparse, we asked the doctor if she would do an elective induction at 39 weeks (the Monday before Thanksgiving) so that my husband could be with me. As much as I tell myself we were doing what was best for our family at that time, I sometimes wish we had waited for him to be ready on his own.

2. When did you start noticing that something wasn't quite right with your child? How did this make you feel?

Derek was a very relaxed baby. The type of baby you would sometimes forget was in the swing or bouncer or laying under that little baby “gym” on the floor. He was quiet, happy, and just seemed to be taking in everything around him. I think having an active older brother who is only 19 months older than him allowed him to settle into that position. Most of his milestones were a little delayed (from a medical perspective), but nothing we weren’t used to, as his older brother didn’t walk or talk until between 18 and 19 months old. We became concerned shortly before his first birthday. He refused to hold his bottle or take a sippy cup. He was unable to feed himself. He raked his food up with his whole hand instead of using the pincher grasp. He wasn’t babbling the same way the kids in my mommy groups were at that age. Around 11 months old I self-referred him to our county’s early intervention program. We were already working with them for our older son, so when I voiced concerns about Derek they offered to do an evaluation.

Early intervention set him up with an occupational therapist and a feeding specialist. His feeding issues quickly became a thing of the past, as we witnessed when he stuffed his face with birthday cake at his 1st birthday party! Soon the feeding specialist was replaced with a speech therapist. He ended up walking around 16 months, but to this day (at almost 3 ½ years old) he is still mostly nonverbal.

3. When did you seek out answers for your child? How did you get them?

Early last summer, when Derek was about 2 ½ years old, I had been reading about sensory processing disorder. He avoided certain foods – fruits, vegetables, and pasta are 3 big ones that he still avoids to this day. He was uncomfortable with walking on different surfaces – it took him awhile to transition from carpet to linoleum; he avoided grass like it was hot lava. He even refused to walk on concrete for some time (even with shoes on). After doing some reading and talking to other parents, I reached out to his occupational therapist. While I had my concerns, she was the first person to flat out express that she thought Derek had autism. Her words exactly – “The thing with sensory integration is that all kids with autism have sensory processing issues but not all kids with sensory processing issues have autism.  For Derek, I see it being the first since he struggles with more than just input such as the social/engagement piece.” I remember feeling like someone had just laid me out on the floor when I read that. As parents we all know what it’s like to question things about our children, but to have someone independently express those concerns – it can be like a punch to the gut. That is when I began to actively pursue a formal evaluation.

4. What is your child's diagnosis? How did having your child receive a diagnosis make you feel as a mother?

Derek’s diagnosis is mild to moderate autism spectrum disorder. It was approximately a month or two wait from the time I scheduled his evaluation to the time he was actually seen. In that time my husband and I did a lot of observing and researching. By the time we received his diagnosis it was pretty much a foregone conclusion in our minds. Which made it easier when the doctor very bluntly told us, “well, let me just tell you, he definitely has autism. No one stims as much as he does and doesn’t have autism.” We knew a diagnosis was the gateway to getting him the help he needs. 

When I let myself be overtaken by everything, then the self-doubt begins. What could I have done differently? Was it something during my pregnancy? Was it the induction? The Pitocin? But I know I can’t be my best for him if I let these questions take over my mind. I have my pity party and move on. I have to be mentally strong to take care of him, advocate for him, and be the best mom I’m capable of being. 

5. What have you learned from your child? What do you want others to know about his/her diagnosis?

Derek has taught me patience and that looks can be deceiving. He may be nonverbal, but he sure knows how to get what he wants! And he’s smart – don’t let him fool you! He has this big, beautiful brain that’s just wired a little differently. For me, he is joy personified. His smile, his giggles, his big blue eyes . . . they give me hope. Hope that he’ll be the best person he’s capable of being, whatever that means for him. Hope for acceptance. Hope that someday he’ll understand just how much his mama loves him.

Derek is now almost 3 ½ years old. In the short time that we’ve been on this autism journey I’ve learned how much the idea of a “spectrum” really suits an autism diagnosis. Every person with this diagnosis is unique. You will never meet two the same. I’ve also come to realize that this isn’t just a learning disability or something that can be taught out of him. There is something truly different about his brain that we may never understand. 

So today, as we raise awareness and acceptance, I want people to open their minds and their hearts. Listen and observe a little more, talk a little less. When you spend time with an autistic person, you can’t expect them to enter your world. Enter THEIR world and I guarantee you, you will be amazed. Don’t pity them, appreciate them and love them for who they are. Don’t expect them to conform to your norms; take immense joy in allowing them to march to their own drummer. You will learn something new—
I know I do every day.

Transatlantic Tuesdays: Walking on Eggshells

Dear Maxine,

Well, life has really taken me places recently, so much that I completely forgot that it was my turn to respond to you, so I apologize that I'm finally writing a week late. You were kind and didn't even bug me about it. You really do take things at a slow pace, and I love it. No pressure.

Which reminds me of what you said in your last letter:

"Since Rukai has come into our world, the big has got smaller and the small has got bigger and everything meets in the middle in a place called 'What Rukai Needs.'"

I love your motherhood philosophy--all mothers would do well to take life as it comes with their children. Comparing only brings discontent. Your mantra, "At the speed of Rukai," is inspired. Go, you.

And now to your question (from two weeks ago--sorry, again):

Hints of spring are scooting around these shores and I know there's been a shortage of the white stuff on the ground over there as the weather settles. With the warmer weather on the horizon I'd ask what your biggest concerns or worries are when you get out and about, outside the confines of the safe space of 'Home'. I'm always worried I'll bump into some horrible person who says something for which I'm unprepared and I won't stand up for my son as well as I should. I don't want to be caught off guard. What are those worries for you? How do you prepare to face them?

Well, there's always a shortage of white stuff in good old Southern California, but the trees are blooming and scenting the air around them and it's my favorite time of year. Yes, we will be getting out and about more--in fact, we are leaving soon to visit family out of state for the Easter holiday and spring break. Luckily, this visit will be with family, and they never judge me or my kids, but we will for sure be visiting some sites and taking little trips in that state to places that are not too familiar.

I'm not going to lie--I get stressed, EASILY, when going places with my entire family. A 12-year-old daughter on the spectrum, a 9-year-old son who is quickly becoming a master negotiator, and a 3-year-old son who needs more attention than them all. My husband will be on break with us, so it will be nice to have extra help, and I'll have some family to help, but don't mothers almost always take the brunt of it all? They feel the difficulty, the distress, the disarray, more than anyone else, and this means that I don't always enjoy myself while I'm out with my family. I'm trying to let go more and not try to control every situation...but that's another post for another day.

I guess what worries me the most is the unpredictable moments that will inevitably happen with my daughter. Take going to a bookstore, for example. My daughter loves books. Even when I tell her, repeatedly, that we are not buying anything--we are just looking--she will no doubt find SOMETHING in that store that she absolutely has to have. Now, for most kids, the parent can say, "Now dear, remember, I told you that we aren't buying anything today." But not me. Telling her that would mean certain death. It would mean a total meltdown, because once she has her heart set on something, there's no going back. Nothing will appease her, or calm her. And I have dragged her out of stores many times while she kicked and screamed. Sure, that seems okay if, say, my 3-year-old does it (no one would bat an eye, more likely smile knowingly if they've ever parented at toddler), but when it's a tall 12-year-old? No knowing smiles--only quiet whispers with the person nearby, glaring eyes directed our way, heads shaking in disapproval and shock.

I feel like I'm walking on egg shells whenever I go out in public. Trying so hard to avoid any tantrums or meltdowns. It's exhausting, physically and mentally. And I've been doing it for a long time now. I felt like I was completely spent about a year ago--like I had hit a wall, literally, and had nothing left to give. And then I started writing more, and sharing my writing, and things began to turn around. Writing has been my therapy.

So here's to my upcoming family trip--may I learn to worry less and enjoy more (haha!) Life is meant to be enjoyed, right? As long as I can enjoy it through the lens of my children, it is possible.

And now for your question of the week:

I talked about how I hit a wall last year. Have you hit your wall? Have you ever felt spent as a mother? What helps, (or helped) you overcome this?

Sincerely,

Your friend, Kera, across the wide Atlantic

Links to all Transatlantic Tuesdays Posts:
02 Feb 2016  |  http://downinfrontplease.blogspot.co.uk/2016/02/transatlantic-tuesday-letters-from.html
02 Feb 2016  |  http://thespecialreds.blogspot.co.uk/2016/02/transatlantic-tuesdays-letters-from.html

09 Feb 2016  |  http://downinfrontplease.blogspot.co.uk/2016/02/no-but-i-have-son.html

16 Feb 2016  |  http://thespecialreds.blogspot.co.uk/2016/02/transatlantic-tuesdays-4-take-high-road.html

23 Feb 2016  |  http://downinfrontplease.blogspot.co.uk/2016/02/pride-of-my-pride-transatlantictuesdays.html

01 Mar 2016  |  http://thespecialreds.blogspot.co.uk/2016/03/transatlantic-tuesdays-hardest-moment.html

8 Mar 2016 | http://downinfrontplease.blogspot.co.uk/2016/03/life-at-speed-of-rukai.html

My First Ebook: When a Diagnosis Changes Everything

I'm happy to share with you my first ebook, which is a collection of stories from 11 of my amazing writer friends I've made during the last year. Yes, they've been published on several different sites, but above all, they're amazing moms and advocates for their children.

It's available HERE at 50% off (just $5) when you use the code HC36Q!

Or, you can get the ebook for FREE when you do the following:

1. Like "The Special Reds" on Facebook if you haven't already.

2. Share this post to Facebook.

3. Subscribe to The Special Reds by email (on the right sidebar of my site, on the popup window of my site, or on the left sidebar directly from my FB page).

4. Leave a comment on this post letting me know you were here!

You have until April 2nd, Autism Awareness Day, to complete the requirements.

In honor of this important day, I will send the ebook to all my subscribers! (It also happens to be my birthday, so I'd love to give you all a gift, too!)

I hope you will take advantage of this offer and join my mailing list so you can continue to get these special offers!

*******

From the introduction:

"Diagnosis. It’s a word that often doesn’t bring happy feelings.

Often, by the time you have gotten a diagnosis for your child, you’ve already climbed a mountain. You’ve sat by and watched your child slowly slip away, or present strange symptoms, or not progress typically on the milestone curve. And you felt fear—real, true fear, about what the differences might mean for your child’s future.

For some, the diagnosis might have come at birth—as a complete surprise. For others, the diagnosis might take years to discover—years of doctor visits, blood tests, specialists, and hospital stays. And for some very few, even after all those years of hoping and praying, a diagnosis remains unknown.

Whatever the path to your child’s diagnosis, there was a journey taken. You learned just how much you love your child—how far you are willing to travel to get answers so that unsettling feeling can leave your troubled soul. You kept climbing and reaching only to get to the top and realize that the diagnosis is only the beginning. Now real life can begin with your child, and, armed with more knowledge and support, you trudge down the other side, having no idea what awaits you. But you keep on walking, because that’s what mothers do.

In the following pages, eleven incredible mothers share their children’s diagnosis stories. Though each one is vastly different, one thing remains: a diagnosis changes everything."

Celebrate Our Differences

I love going on bike rides with my family. It makes me feel like we're so...normal, even though we are far from it.

No, that's not my family in the picture. But don't they look so normal and perfect? I wonder what secrets they are hiding.

Today we rode to a nearby park. When we got there, Nathan ran around kicking the soccer ball, Julianna went to the swings, and my husband and Blake played basketball. So...normal.

After a little while, the kids headed for the playground where there were some cute little girls playing with their dad and grandma. They seemed so sweet and perfect. Suddenly, Julianna leaned to me and said, "Mommy, that girl doesn't have an ear."

I thought that wasn't possible. The kids continued playing, and this beautiful little girl slid down the slide near me. As she ran by, her long black ponytail bouncing, I saw that her ear was very small and disfigured, as well as the side of her face, slightly. She turned to look at me, smiled, and I smiled back.

I said to Julianna, "You were right. Her ear is different. But that's okay. Everyone has things that make them different. You do, too."

It made me think how much people try to look normal, to fit in. Why is that? What is wrong with being different? What is wrong with talking about our differences? I wanted so much to ask the dad and grandma about their little girl, but then I felt like I'd be pointing out her difference, so instead, I smiled at them, wishing they could read my mind and know that I get it. I know what it's like to have kids that are different.

If they only knew that each one of my kids has something that makes them "un-normal." If they knew that my daughter had autism, that my son was born with a rare blood disorder, that my other son with a birth defect, probably like their little girl was.

Who even has a normal family anymore? I think it's time to celebrate differences and embrace what makes our families unique. Hiding behind the differences only keeps others from connecting to the very people that could be a blessing in their lives. This family could have been a blessing in ours, but I didn't say anything, and I can only hope that we see them again.

I have learned that living in the open is much more freeing than hiding what I am facing as a parent. The friendships and relationships I have made as a result are priceless. Normal is so overrated.

How Would Your Children "Rate" You?

I remember it was about a year ago, at the end of another long, draining day as a mom. The bedtime battle was about to begin. Interesting how much energy children have at bedtime, and how much energy I have to muster to make it happen. Because stress accumulates, much like a teapot kettle about to whistle, I typically blow off steam at my children during bedtime. I'm tired, and they're not, and I just want time to myself to let my brain recharge for the next day.

On this particular day, though, I must have let off so much steam that I felt bad, guilty. I felt like I was harming my children through my anger and stress, and they didn't deserve it. I could do better, I thought. I NEED to do better. Don't moms always think this about themselves? Guilt is such an easy emotion to grasp, at any given moment.

Once I finally got them settled down, I suddenly had the thought: Being a mom is like my "job" right now. It's my position I have to fill, every single day, and it's a big one. But it's not like a typical job one might have outside the home, where you have a boss watching your performance and giving you regular critique. If my kids were to "critique" me, or rate me, what would they say? I wondered. They are watching me, like a boss might, right?

Given that this day was already a flop, in my opinion, I was scared to ask them. So I decided to ask them individually. I went to my middle child, and asked, "Do you know what it means to rate a person, like on a scale from 1-10?"

"Yes, I know what that means," he replied.

"Okay, so if you were to rate me as a MOM, on a scale of 1-10, what would you give me?"

Before I could even cringe or back away, this is what he said: "10!!! Mommy, you are a 10!!!" He held up both of his hands to show his 10 fingers for even more emphasis.

My eyes welled up with tears. What did I do to deserve this? I wondered. Doesn't he remember how mean I just was to him? All the yelling and demanding that he get in bed so I could get a moment to myself?

I wiped the tears from my eyes and asked, "R-rr-really? You think I'm a ten?"

He smiled again and flashed those fingers, dancing them around as I exited his bedroom.

Stunned, I walked to my daughter in the next room. I wanted to make sure she understood what a rating scale meant first (being on the autism spectrum makes this a little more challenging). "Do you know what it means to rate something from a scale of 1-10? So, if I asked you how much you liked, say, ice cream, a 10 would be you like it a lot, a 1 would be not at all, a 5 would be you like it okay. Does that make sense? So, how much do you like ice cream?"

"Umm....a 10," she replied.

"Good. Okay, so if you were to say how good of a mom I was, on a scale from 1-10, what would you say?" I braced myself for brutal honesty.

"Umm...a 10, I think," she said.

"Wow, really? Thank you, sweetie!" I squeezed her shoulder, and peeked into my son's room. He put up those ten fingers with a million-dollar grin. Before I went downstairs, I just had to ask him, "Why did you give me a 10? Even when I'm mean to you sometimes?"

"Because you do things for me, and you take care of me," was his simple response.

I walked downstairs in a haze, feeling on top of the world. My little "bosses" just gave me a perfect rating. Maybe I wasn't messing up so badly after all.

What I realized from this experience is that love matters more than anything else. Moms will make mistakes all the time, but it doesn't mean we don't love our children any less. Our children can feel this love, regardless of the many mistakes we make. They forgive us because they love us. I guess moms need to learn to forgive themselves, and see themselves the way their children do, as "perfect 10's," because we are, in their eyes. Don't be your own worst critic—you are doing a great job. Just ask your children.

Time Out For Women, 2016

For three years now, I've been fortunate enough to attend Time Out For Women, an event produced by Deseret Book. There are speakers and performers on Friday evening and most of the day Saturday. I always look forward to this weekend, because I know that I will come away learning things that will give me strength to go forward as a mother, wife, and individual. So we ventured to Long Beach, which took much longer than planned thanks to a freak thunderstorm during the drive, but made it there safely, ready to soak in all the spiritual inspiration we could get.

Friday night there were two speakers: Elaine S. Dalton, former General Young Women President; Whitney Johnson, an entrepreneur/author/businesswoman; and a female vocal group called Mercy River. Some thoughts that I wrote down from these great women:

Elaine Dalton:

-We need to strengthen our faith--in ourselves and in the Gospel--and go to the scriptures
-keep our focus on the Savior, not on the tumult around us, EVERY SINGLE DAY
-Doctrine and Covenants 121:45--let virtue garnish thy thoughts unceasingly; then shall thy confidence wax strong in the presence of God and the Holy Ghost will be a constant companion
-we need to be virtuous and pure to have confidence
-we can be more than we allow ourselves--don't live below your privileges
-we need to ask the Lord to walk with us through our trials--we can't do it alone
-covenants give comfort, especially when a loved one dies or you have a child with challenges

Mercy River:
-favorite song: "Long for Home;" they also said, one thing we can always do is love our children the way God loves them

Whitney Johnson:
-described her love of sugar and how she's been off sugar for a few months
-talk to God out loud--creates a moment with Him and makes our prayers come alive
-hear His voice--use our ears--singing together can make our hearts beat in unison
-bow down before God--experience time with God with your whole being
-taking the sacrament is an experience with God--use full engagement of your senses
-reach out and touch Him--hugging someone can give a connection and help share the burden of someone else
-because she's not trying to find God in sugar, she's finding him in a lot more places
-Will you give up your "sugar" so God can show up to you?

Saturday we heard from more great speakers and performers. Here are some of the highlights:

Lisa Valentine Clark (author, youtube channel producer)
-read the words to the hymn "Ere the Sun Goes Down" and how it relates to motherhood
-becoming something is more important than the doing
-when we feel like we can't do it anymore, we ask for help--we pray

April Perry and her daughter (local attendee asked to speak; she's also a friend of mine)
-spoke about her experience helping her mother with Alzheimers and how it has taught her children
-ask the Lord how he wants to heal you--heartbreak can heal and bind you closer to the Lord

Laurel C. Day (author/speaker)
-spoke about the atonement
-find safety in his wounds, find comfort in his scars, find peace in his pain
-two kinds of scars--fallen world scars and expectation scars
-don't focus on what you don't have--think of what you do have and find comfort
-when you don't get your miracle, let the miracle be seen through your healed heart

Emily Freeman (author/speaker)
-what if my only motive was LOVE?
-look for what is common between you and others
-Luke 1:53--He filled our wanting with good things


Things I realized after attending that I need to change in my life:
-I need to make scripture reading a priority again so I know that I'm doing what my Heavenly Father wants me to do, every day
-I need to make sure I am living a fully virtuous life so that I can have CONFIDENCE that what I'm doing is right, and also have the Holy Ghost to guide me in every decision I make
-I need to remember that my life still has plenty of miracles even though it might not be what I expected it to be

Transatlantic Tuesdays: The Hardest Moment for Me Thus Far, and How a Friend Helped Me

 

#TransatlanticTuesdays is a collaboration between me (in the US) and Maxine who blogs at Down in Front, Please (in the UK) - sharing our journeys in the form of letters to one another.

Links to play catch up are at the end of this post.


Dear Maxine,

I am glad to hear you are feeling better. I absolutely loved reading the story of Rukai's path to walking freedom. I can very much relate to your experience--my oldest, Julianna, also had hypotonia and was a late walker (or what some might call late). At least she wasn't on the typical bell curve. She was scared to walk, and we did go the therapy route. Lots of physical therapy. It paid off, and she began walking around 20 months old. Didn't mean her gross motor skills were in check, but walking was the first step. Certainly watching her meet milestones has made me realize how much I take for granted in this life. I have it so good, and should never complain, really.

So on to your fabulous question: Tell me about a time when you really believe you were only able to get through a difficult time because your support network circled the wagons and lifted you? Do those who supported you then really know just how much they helped you?

Oh my. I'm sitting here trying to pinpoint just ONE difficult time. I'm trying to gather up in my mind the many, many people who have supported me over the last decade and get me through my motherhood journey thus far. But there is one experience that stands above the rest, and it's something I've never written about before, so here goes.

Hands down, the most difficult thing I've gone through with my three children (and that has been A LOT) is when my youngest had his palate repair surgery. He was 9 months old at the time. Previous to this, the surgery had been postponed TWICE by the surgeon due to conflicts, so by the time the actual day arrived, we were more than ready, and twice as anxious. Even though we had met with Nathan's surgeon a good number of times previous to this, and thought we knew what we were getting ourselves into, we really had NO idea what to expect.

The checking in part, and handing him off to the surgeon part were not as bad as I expected. I thought I would cry as he was wheeled away into those double doors, but I didn't. We went down to the waiting area with our "number" to watch on the big screen and sat there, surrounded by other parents also waiting for surgeries. Talk about a tense feeling in the room. Not much talking, other than those within their own families. We were all there for very tough reasons, and silence was just easier.

When the surgeons came down and announced that the surgery went well, we felt relieved. We were expecting it to go well because we felt confident in our surgeon. A few minutes later we were able to go up and see our little baby boy in the recovery area.

Now here's where it gets hard for me. Even typing this, I am crying. Just thinking about this moment still haunts me to my very heart and soul. I walked over to my baby and saw his very swollen face and jaw, saw how he could not even close his mouth, saw how groggy he looked, how much pain he was in--it brought me to my knees. I couldn't even bear to hold him the first few hours. The surgeons don't tell you how bad it will be after, maybe because ignorance means more courage at the get-go? I'm not really sure. All we knew about the recovery was that most babies go home after one night in the hospital and are able to drink from the bottle just fine afterward. No big deal--we can handle that!

Well, this didn't happen with Nathan. Joel, my husband, was able to stay the first night, but the next day he had to go back to work. I stayed there with Nathan the next day, struggling to get him to eat, and he still wouldn't. The pain was awful for him. When it looked like we would be staying another night, I felt like there was no hope in sight. How will we get through this? When will my little guy eat again? How will I be able to take care of him when we get home? I've never been so worried or scared as mom, ever.

Later that evening, after Joel came to visit and went home to take care of the other kids, one of my dear friends called to ask how I was doing. I lied and said things were going okay. We talked for a bit, and hung up. About an hour later, she surprised me at the hospital to say hello and even brought me some food and treats. She sat with me as I cried and told her how challenging this surgery had been for me, especially for Nathan. She listened to me. She was there when I really needed someone, and she still has been.

Support as a parent of exceptional needs children is vital. It is the lifeline. We simply can't do this alone, no matter how much we think we can. If we try to do it alone, we will probably drown. The old saying, "It takes a village to raise a child," doesn't apply when you have special needs kids, because it takes a TOWN, a CITY sometimes to keep you going. This is one of the biggest things I've learned in my first decade of motherhood.

So Maxine, as I wipe my tears away, I now get to ask you a question: What have you learned from being Rukai's mom that you didn't know before? How have you changed?


Staying strong in the US,

Kera


 
02 Feb 2016  |  http://downinfrontplease.blogspot.co.uk/2016/02/transatlantic-tuesday-letters-from.html
02 Feb 2016  |  http://thespecialreds.blogspot.co.uk/2016/02/transatlantic-tuesdays-letters-from.html
09 Feb 2016  |  http://downinfrontplease.blogspot.co.uk/2016/02/no-but-i-have-son.html
16 Feb 2016  |  http://thespecialreds.blogspot.co.uk/2016/02/transatlantic-tuesdays-4-take-high-road.html
23 Feb 2016  |  http://downinfrontplease.blogspot.co.uk/2016/02/pride-of-my-pride-transatlantictuesdays.html