Guest Post: Spencer

To end World Autism Month, I asked a friend, Virginia, to write about her son Spencer, who has autism. I met Virginia's family through church, and still remember the first time I saw Spencer there after we moved to the area. Julianna was only 20 months old, so I didn't quite know what was going on. But as things progressed with her, I got to know Virginia more and she has been a great support to me in my journey so far. She is an amazing mom with 5 boys and I am glad to call her my friend.

 



Spencer’s story began on Monday, December 3, 1990. He was overdue so I agreed to have labor induced. After 5 hours of labor, he was born, weighing 8 pounds 10 ounces. He was our second son. His older brother Stuart was 2 years old.

 He was a typical newborn baby, for about a month. Then he began to change. His first change was he stopped napping. He would sleep in my arms for about 5 minutes and then wake up. At night, he slept, but never through the night. He made milestones of smiling, sitting up, and rolling over as he should. He would babble and seemed social but was also restless. We just thought he was that difficult child that every family seemed to have.

 When Spencer was a year old his baby brother Stephen was born. We now had a 3-year-old, a 1-year-old and a newborn baby. When Spencer was 2 years old, we moved to a new community. We now consisted of 4-year-old Stuart, 2-year-old Spencer, 1-year-old Stephen and one more baby on the way. Life was HECTIC.

 We began to notice very subtle problems. Spencer didn’t make eye contact, he didn’t follow verbal commands, and he didn’t progress in his speech. His 1-year-old brother was surpassing him in everything, except motor coordination. After Spencer slipped past us and ended up on a busy road by himself, we decided that there were problems. With great sadness I told the doctor I was concerned he had autism. The doctor agreed and our fears were realized.

 Soon after his diagnosis he began pre-school. He made little bits of progress, but it was slow. With intense speech intervention, our hopes were high that he would begin communicating, but it never happened. Wherever we went I had to explain to people why he was acting the way he did.  Very few knew what autism was. We were called poor parents and told he just needed to be spanked a little bit more.

 In 1997, against all advice, we decided to have another baby. We knew there was a chance we could have another child with autism. We still decided to have another, having faith we would be blessed. We soon found out another boy was on the way. My fears were increased. Then terrible news: my father had cancer and would not live much longer. In September of that year we drove 4 little boys to Wyoming to visit with my dad, their grandpa, for the last time. As I visited with him for what I knew would be the last time in this life, I found my father to be very in-tune with the spirit. He promised me that our baby boy would be unaffected by autism. He never got to see his youngest grandchild, Benjamin.

After Benjamin was born, things went from bad to worse. Spencer would not sleep, he would sneak in the baby’s room and either wake him up at all hours of the night or he would lay on him and try to smother him. He would start fires in the kitchen when food was cooking and he would climb over the back fence every day. I had to be constantly vigilant. Our school aged sons were prisoners of the house. They were afraid to invite friends from school or church over. They had to have permission to get out the door as it had about 5 locks on it. It was then that our family made the hardest decision we have ever made: Spencer would be placed in a home where his needs could be better met. Our little family would need to function normally. Although it was the right decision, it was incredibly hard. I still feel great pain with this decision.

 

Spencer is now 23 years old and happily living in a nearby community. He has two families that love him immensely. He has reminded me that the Lord is in charge. He has a plan for all of his children. There are those in this life that are here to teach each of us patience, compassion, and unconditional love. I am grateful for the perfect baby, now man, who was sent to me that the Lord’s works may be made manifest through him. I am honored to be called his mother.

Double News Tuesday

Today I got a very important letter, and a very important phone call. I'll start with the letter.

A couple weeks ago, I called our local regional center to see if Nathan would be eligible for services because of his cleft palate and chromosome 22 duplication syndrome. I left a message for intake, never heard anything after a week. Finally, I called Julianna's case worker, who is amazing, and she gave me the direct email for a person who works in intake. Emails are always much faster. Within two days, I heard back by email, and got a call that same day. I was asked many questions about Nathan's development and health concerns, and I was told she would send these answers for review and I would find out in 2 weeks if Nathan would qualify for early start services.

Well, it didn't take two weeks, it only took one, so I was surprised to see the letter so soon. After reviewing the case, Nathan will qualify for an early start evaluation to determine if he will be eligible for services, such as speech therapy, in his case, or others they think he would qualify for based on their evaluation. Now I am not too concerned yet about his development, especially after having the tubes placed again, but after what I've been through with Julianna, my attitude is better safe than sorry. If I am able to get these great resources for free, in my home, it's only going to benefit Nathan's development, and me as a mom. So we will see what happens with that.

And then later this afternoon, I got a call from the pediatrician's office about the blood test that was done for Julianna almost 3 weeks ago: the microarray test. This was the same test that Nathan did, and it was discovered that he had the duplication of chromosome 22. Because this duplication usually affects children from the same family, often in different ways, I thought for sure that Julianna had the same duplication. And I thought how neat it would be that because Nathan came to our family, we would find out exactly what has been causing Julianna's symptoms all these years. It was going to be a "full-circle" moment for me, where you realize why you were supposed to have another baby, where your baby was the key to unlocking your other child's mystery. Well, that wasn't the case.

Julianna's blood test came back completely normal. I could not believe it.

The nurse on the phone casually shared the info, and I took a while to respond, because I really, really thought it would show that duplication. She seemed in a rush, as they usually are, and told me to have a nice day. But if she only knew what she had just told me! Since last August, when we found out about this duplication of Nathan's, and his geneticist told me that Julianna very well might have the same thing, I felt like Heavenly Father had an even greater plan for Nathan coming into our family by revealing this secret in our chromosomes. But it was not meant to be.

What does this mean for Julianna? Nothing, really. She will go on getting the same services as before, and I will continue to raise a daughter with about 7 different diagnoses. I was really hoping for the chromosome duplication, because in a way it would solve the mystery of her entire life, and then it could just be one diagnosis. Again, not meant to be.

What does this mean for me? Well, if we ever decide to have another baby, that baby would no longer have a 50% chance of inheriting the same duplication. Because Nathan is the only one who carries it, he is considered de Novo, or first-generation carrier, something they can't explain at all. I guess that is a relief to know that any future children we might decide to have will be exempt from a cleft palate.

I sure have learned a lot being a mom to these beautiful kids. But my journey isn't over yet. At least it's a little clearer today.

Julianna, Part 5: The Learning Phase

When your child receives a diagnosis (or two) and you begin atteninding IEP meetings, suddenly you are thrust into an entirely new world. Julianna simply couldn't just be sent to any class, with any teacher, and do fine. No, there had to be meetings, long meetings, where you would sit around a table and discuss your child's strengths and weaknesses with a psychologist, OT, PT, speech therapist, the principal, a classroom teacher, and the one I feared the most: the special education director. I'll call her "Mrs. Fox" to preserve her identity and reputation in this and future posts.

The first few meetings, I was just getting used the idea of having all these facts thrown at me, many of which I did not understand. We would read over reports, evaluations, and then come up with personalized goals for her school plan. I loved that everyone was thougthful and honest, and patient with me when I would cry as I would hear just how low she was in every category, and how I felt lost most of the time. I cried at every meeting. They were generally very supportive. The first thing they told me to do was send in the current IEP and reports to the Regional Center so she could get services there. They assured me that she would qualify given her delays. And they would always turn the time over to me, and I would share some things that I thought she could work on, but really, they covered pretty much everything, I thought. They were taking the burden off my shoulders and helping me cope with the reality of my new situation.

But what I soon learned after entering this world is two things: 1. I had to learn more about all this IEP/special education stuff so I could sound knowledgable. And 2. I had a voice as her parent, the most important one. If I didn't agree with anything, it wouldn't happen. But if I wanted something in particular, that was another story. For example, the one goal that been on her IEP from the beginning was "being able to release on the toilet." The first year of preschool came and went, and Julianna grew in amazing ways. But that potty training goal remained unchanged. And then more shocking news...Julianna did not qualify for services from the Regional Center. The main reason: Julianna did not have a diagnosis of autism. It turns out that Regional Centers only allow certain kids in, kids who need more help than Julianna did. But I knew she needed it, and the entire team could not believe she was denied, and said we would continue to fight this.

And as she approached her 5th birthday, I began to get those little feelings again, those feelings that nag at your brain and don't let you move on in peace. Her behaviors of hand biting, tantruming, and head shaking persisted, despite the therapies at school. I began to wonder if she did have autism...after all, it might help her get that help from the Regional Center. So I called for an IEP meeting. That's right, I used my power as a parent, called a meeting, and requested that she be evaluated again, this time to see if she did in fact have autism. A month later, we met again to go over the results. And she received a new diagnosis: autism, in the moderate/severe range. And possibly Asperger's, meaning that they really thought she would improve to the point where she would only have Asperger's.

There it was, in black and white. Autism. The diagnosis I had been dreading since I first heard the word spoken to me by my neighbor, over 3 years ago. From my journal, October 12, 2008:

"They determined that you do in fact have autism, in the moderate range, and possibly Asperger's syndrome. I had thought you had autism for a while now, so I wasn't too surprised. But I hadn't suspected Asperger's. This new diagnosis means you will get more services that will help you improve and progress. This last year has been your hardest yet, so I hope it will only get better from here. Now this doesn't change anything about our love for you or how special we think you are! We know you can do anything you want in life! Autism means you will have more challenges to reach your full potential. But you'll get there! We'll never give up on you."

Now that Julianna had the official autism diagnosis, we once again sent in the paperwork to the Regional Center. For sure she would qualify this time, I was told. She desperately needed the resources that Regional Center could provide in the home, specifically, potty training help. Julianna's future progress in many areas was riding on this help. All we could do was wait and see what they would decide, a second time now. And if the Regional Center wouldn't help, I was sure that the school district would make up the difference, or so I thought. Enter Mrs. Fox...



 

Halloween 2008, during our waiting period

Julianna, Part 4: The Facing Reality Phase

After reading the book The Out of Sync Child, I followed the author's advice and brought Julianna to an occupation therapist for evaluation. This was a big step for me. I was finally willing to do the right things to help Julianna, whatever that meant I would learn about her. No more turning therapists away, or entire regional centers. It was time to find out what was going on, and what could be done to help her.

Unfortunately, I was not impressed with the evaluation by the OT. They were very rushed, and impersonal, and didn't seem like they were trying to help. Then a good friend from church told me about the school district, and that I could have her evaluated by them. I didn't even know this! Why didn't doctors tell me this? In case no one has told you, your child can be evaluated by the school district at age 3, when they are no longer eligible for early intervention. I was so excited to call them and see what they could do. It was at the end of April, 2007.

Unfortunately again, I hit another road block. The school year was almost over, and they could not schedule anything until the next school year began. This meant I would have to wait 4 or 5 months before I got any help. I had already burned my bridges with the local regional center, so I was pretty sure I couldn't go to them. I didn't want to wait anymore...I was ready to get things going for her. But there was nothing I could do but be patient. Patience has been a huge part of this journey with her.

So we got through the summer, had another failed potty training attempt, and looked forward to September when Julianna would be officially evaluated by our local school district. The day finally came, and I was told to meet the "team" at a preschool site. I was greeted by the district psychologist, speech therapist, and a few preschool teachers. They had me fill out some questionnaires about Julianna while they just watched and observed her play with toys.

Once I completed the tedious paperwork, I was able to talk with the speech therapist and psychologist in a way I've never been able to with doctors. They wanted to hear everything about her history, her current behaviors, her milestones, and they just let me talk, for as long as I wanted to. It was so refreshing to have people listen to me as I described Julianna. And talking about her made me feel so much better--I was no longer trying to hide anything. I was ready to face whatever they thought was troubling Julianna, however challenging that may be. I felt like I wasn't alone anymore, I had people who were going to be there for her now, and it was a huge relief for me as a mother.

Those of you just starting out, please don't make the same mistake I did. Don't suppress or conceal those little feelings you have. Get help, right away. Don't wait, don't try to pretend everything is okay. If I could go back, I would never have done the things I did. I would hever have turned away wonderful therapists, or waited until she was 3 1/2 to finally admit to myself that something wasn't right. I try to rationalize my past, saying that I was too busy with Blake's new health challenges and just couldn't face any more. But really, I was afraid. I felt safe keeping it inside. But what I realized in that first meeting with the school district is having the opportunity to talk to professionals about your child is one of the greatest things in the world. Having a team working with your child makes you feel like you don't have to do it alone. So seek out help, as soon as you have those feelings. You will not regret it.

Of course seeking out help meant I had to face reality: I had a child with special needs. I had to learn how to accept this, which does not happen overnight. I spent many nights crying to sleep, many days worrying. After the evaluation, I went to my very first IEP (Individualized Education Plan) meeting with the team, and got to hear them share what they found. Here's what I had to face: low muscle tone; difficulty sitting still; sensory issues; low percentiles in locomotion and manipulation; needs physical therapy, speech, and occupational therapy once a week; low percentiles in every category (communication, daily living, socialization, motor skills, adapative behavior). Basically, she had global delays. But the CARS (Childhood Autism Rating Scale) that they had me do showed her in the 22 range, which was non-autistic.

All these things I learned about Julianna were eye-opening. I had no idea she was so delayed in so many areas. I told them that previous neurologists had ruled out autism, as well as her former physical therapist. I didn't want her to have autism--I was scared of that word. During that time period, all you heard about autism was negative, scary, and hopeless. So to me, having delays meant she just needed to catch up. And now I had a team that was going to do just that. She was also qualified to attend the special day preschool in our district, where two other boys from church already attended. She rode the bus to and from school, received her therapy there, and things were beginning to look up. I had the help she needed...for now. What I have found with having a special needs child is just when things seem settled, or fine, they suddenly aren't.

First day of preschool, October 2007

Why I Need the Savior

In honor of the Easter holiday, I felt compelled to share my personal testimony, or belief, in Jesus Christ. I know that he suffered in the garden of Gethsemane for all my sins, pains, and sorrows. Because He did this, I can repent of my sins and become clean; I can turn my burden over to him; I don't have to suffer in this life. He died for me, and for everyone, on the cross, so that we might all live again after this earthly life. He rose on the third day, from the tomb, a resurrected person, with flesh and bone, body and spirit. Because He did this, we too can be resurrected and gain eternal life, and live with him forever, as long as we remain worthy and righteous and do His will on earth. This is what I know to be true, because I have prayed to know. I have read the scriptures, I have sought out a personal witness of these truths. I cannot deny what I feel inside, and try my best to emulate Jesus Christ in all that I do.

Life is not easy. It was not meant to be so. But because we have a loving Father in Heaven, who was willing to send his Only Begotten Son to the earth, knowing He would go through bitter persecution and ridicule, and who would make the greatest sacrifice of all, life does not have to be as hard as we make it out to be. This is the power of the atonement. The atonement can heal all our pains, sorrows, and mistakes. We just have to turn to our Heavenly Father in prayer, and in the name of Jesus Christ we can feel peace and joy again. It doesn't mean we won't have trials or challenges--it means we need to remember we are not alone in those trials and turn to the One who can get us through them.

In my life, I could not go on each day without the Atonement. Each and every day, I pray to receive help through Christ's atonement so that I can face with joy and positivity the many challenges I face. I am never alone as a mother--Christ is with me every step of the way. Through the Holy Ghost, I can feel His comfort and guidance, as long as I remain humble and clean. When I take the sacrament each week, I am renewed as well, and commit once again to take Christ's name upon me and always remember Him.

This is what I think about as I celebrate Easter. How blessed I am to have a a Savior that lives, that loves me, and that will lift me up in my adversities. I hope we can all remember the real reason why we celebrate Easter. His resurrection means we can all be resurrected and return to live with him again one day, as long as we endure with faith and repent daily of our sins. I am so blessed to be a member of the Church of Jesus Christ of Latter-day Saints. I know it is the true church on the earth, preparing us for the Second Coming of the Savior.

Below is a video to help us remember Easter. Please watch, and I hope you all enjoy Easter with your families.

Julianna, Part 3: The "Breaking Point" Phase

There comes a time when fears, denial, they begin to eat at your insides. And no matter what you try to force your mind to believe, your heart and soul overpower it, and tug at you, until you feel like you're going to explode. This is how I felt in the early months after Julianna turned 3. Something wasn't right. As much as I wanted to continue saying she was just fine, I couldn't go on like that.

But the problem was, I didn't know where to turn. Autism just didn't seem like the answer to me. What else was there? She had some classic autism signs, like arm flapping and head shaking, but I knew she was all there. When I looked in her eyes, I connected with her.

I talked openly with family during this time. I remember having a conversation with one family member, saying I thought Julianna might have a new type of disorder yet to be discovered, and that it would be named "The Julianna Syndrome." She just didn't seem to fit in any one category, and for this reason, it was easier for me to deny that she had anything wrong.

So I went on this way, for a few months, knowing something wasn't right, but having no idea what. Doctors would just say she had mild delays, and would catch up in time. Every video or article about autism during that time period didn't describe my little girl. I felt like I was alone, in a dark room, wanting to get out, but having no light to guide me. Even my prayers were not being answered yet. It was a very trying, hopeless time.

Until one day, my mom called me. She was excited to tell me about a conversation she had with a good friend from our previous hometown. Her son, at the time age 7, had just been diagnosed a few years prior with Sensory Processing Disorder. As my mom began to describe the typical symptoms, it was like that light in the dark room was finally turned on.

She then told me about a book called The Out of Sync Child by Carol Stock Kranowitz. I devoured that book. And I mean, I really did. Imagine feeling starved for the right information for years, and finally getting a taste of it. I didn't just want a taste, I wanted a feast. And this book did just that. If any of you are seeking answers, and aren't sure where your child might fit, this book could have the answers you need. From the book:

"SPD can cause a bewildering variety of symptoms. When their central nervous systems are ineffective in processing sensory information, children have a hard time functioning in daily life. They may look fine and have superior intelligence, but may be awkward and clumsy, fearful and withdrawn, or hostile and aggressive. SPD can affect not only how they move and learn, but also how they behave, how they play and make friends, and especially how they feel about themselves."

So it was her central nervous system. That explained why she always wiggled her hands and feet as a baby, like her body was always charged with electricity. It explained why she had trouble functioning in daily life, or would withdraw, or sometimes even be aggressive. Now that I could finally shed some light on my situation with Julianna, I entered a new phase in my role as her mother. But it didn't mean things got any easier, just...busier.

I Can Do Anything I Want To

Today I went with my husband, a high school English teacher, to watch some of his students compete in a speech/debate tournament. Halfway through, some professors and other debate coaches came in to speak to all the students. One coach in particular did something I will never forget. He asked everyone in the room to stand up, and repeat these words (a few times, actually):

I am gifted

I am unique

I can do anything I want to with hard work and discipline

He then emphasized that no one else can replace you, no one else can do what you can do. And that if we want to go far in this life, we need to incorporate hard work and discipline. Pretty inspirational words to share with high school students who are learning about their gifts and what it means to work hard and stay disciplined. But what about a mother of three in the room, who also happened to be listening? Did it mean anything to me? Oh, you bet it did.

As a mother, of course I first thought of my kids after we recited these phrases. Are my kids gifted? Are my kids unique? And can they really do anything they want to with hard work and discipline? Tonight I'll just talk about Julianna.

Is she gifted? Yes, without a doubt. She is funny. She is determined. She loves to have a friend, and be a friend. She's getting better at horseback riding. She loves to ask questions. And she truly loves others. I have only discovered a few of her gifts and hope to unlock many more. This is not easy to do when so many of her gifts can be overshadowed by her inability to focus at times, and to stay calm under pressure or stress.

Is she unique? This one goes without saying. Almost every doctor who has evaluated her says she is one of the most unique children they've come across. Her different diagnoses under the spectrum are so broad that she's high in some areas, but very low in others. Every child on the spectrum is unique; that's what makes it so challenging to unlock their individual potentials.

But the last phrase had me really pondering: can she do anything she wants with hard work and discipline? Perhaps, but that depends on what she wants to do in this life. What I do know is that almost anything she wants to do will be much, much harder to do than the typical person. The hard work and discipline she will have to put forth will be more than anyone else realizes. In school, for example, her aide is frustrated every time there is an awards assembly, and Julianna doesn't receive one. She was almost in tears once because she knows how hard Julianna works to learn the same things that almost come naturally to other kids. Do I believe Julianna can do anything with hard work and discipline? Honestly, I do, but a big part of that belief comes in the many, many people working with her, including myself.

By the way, I just asked her what she wants to be able to do when she grows up. Here's what she said: to brush my hair and do my hair, to play songs on the piano, to put on clothes by myself, to put on Chapstick, to get married, and to take care of a baby. I like those goals, Julianna. We'll start working on them now.

As her mother, I am willing to put forth the hard work and discipline as well in helping her reach her full potential, whatever that may be. No one else can do what Julianna can do, and no one else can help her like I can.

So grateful for little insights into my life as a mom, even at the most unexpected places.

A Toolkit for Parents of Special Needs Children

Every parent wishes they had a handbook to guide them through the journey of raising children. But somehow, through trial and error, and a lot of prayer, we make our way, raising our kids the best way we know how. But when you have a child with special needs, that handbook would sure come in handy even more. As a parent of three children, each with their own set of challenges, I wanted to share some "tools" that have helped me so far.

Courage  Without a doubt the first emotion that you feel when your child is diagnosed is FEAR. You fear what the future holds for your child. You fear your ability to care for your child now that things will not be easy. We all fear what we don't understand. But fear does not allow you to help your child. Your child was not given to you by chance; you do have within you the capability to be a wonderful parent to that child. You just need to push those fears aside and go forward with courage.

Knowledge  Once you are ready to face the challenge ahead, just like any challenge in life, you need knowledge and understanding. So call every doctor you can think of, seek out therapies, read books and good medical websites having to do with your child's condition. Learn as much as you can. Find all available resources in your area. Find a support group. The more knowledge you gain, the more you can help your child.

Acceptance  A diagnosis is a hard pill to swallow. I know this well, having three children diagnosed with different challenges. You start to see the diagnosis more than your own child. But this can be detrimental to your own happiness as a parent. You must see your child for who they really are, and realize that the diagnosis is a part of them, and makes them unique and special. Don't be afraid of what your child does or doesn't do; accept it and love your child no matter what.

Determination  This one is crucial, because no matter how many doctors you have on your side, no matter how many people are supporting you, in the end, the one person who will do more for your child than anyone else is you! You are your child's biggest advocate. Don't let anything stop you from getting help for your child, from getting answers that you need. Don't ever give up.

Patience  Having special needs children means things will be hard. There's no way around that. You will be dealing with behaviors, delays in development, lots of doctor visits, long nights, unanswered questions, the list goes on and on. You have to be willing to wait for results, for answered calls, and for answered prayers, too. Progress will never happen overnight, so have patience and keep doing the right things for your child, even if it seems like nothing is improving.

Endurance  Life is all about enduring to the end. Special needs children must learn to endure with the specific challenges they have been given. Some might be temporary, and some last a lifetime. Our job as parents is to help them learn to endure in this life and give them the knowledge and tools necessary to do so. At the same time, we must learn to endure as they face these challenges. It can be exhausting, but as long as we know we are doing all we can, we can endure.

Hope  There are going to be dark days, days where you feel all alone, where you feel like you just can't go on as a parent. Where you cry yourself to sleep, worrying about your child's future and well-being. These days are inevitable, but they are only days. Do whatever you can to keep the spark of hope alive in yourself as a parent. Remember, this child was given to you for a specific purpose, so you are capable of being a wonderful parent. Hope will sustain you during those dark days.

Joy  Even amidst those dark days, there can be moments of joy. Joy in seeing your child achieve a new skill that took months, even years to accomplish. Joy in hearing your child speak for the first time. Joy in getting the help you have been seeking from a specific doctor or teacher. Joy in progress, big or small. These moments are what keep our hope alive, what keep us going every day. Don't let yourself get weighed down by the burdens and worries you feel. Pay more attention to the joyful moments.

Love. We all love our children dearly. No matter what challenges our child may have in this life, we love them just the same. Show your child you love them by giving more of your time. Play with them, laugh with them, be with them. Don't allow your child's disabilities rob you of the love you feel, because love is eternal. Say "I love you" every day.


No matter what your child's challenges are, face them. Accept them. Fight for them. Find joy in them. And above all, love them. No one can do this but you. Don't ever shut your toolbox. Use these tools, and others that you have been given, and trust in your abilities as a parent.

Julianna, Part 2: The Denial Phase

As Julianna got closer to age two, I was happy with the progress she'd made. She began walking, using more and more words, and though I was still fearful of the little behaviors, I made up my mind that she only needed physical therapy, and nothing more. Because she had met her goals in that area, and with her teacher that came, she had improved as well, I felt like enough was enough. She no longer needed this help, she would be just fine. And so I made the biggest mistake I've ever made as a parent:

I actually called the wonderful physical therapist and told her Julianna would no longer need services anymore.

I can remember standing in my kitchen, looking out the window, and saying this to her. She had met her goals, therefore she no longer needed the help. The therapist was quick to respond, asking me to reconsider, and that Julianna could still go a lot further with her help. But again, I said, no, I really think she'll be just fine. I even went so far as to tell her to cancel her file at the regional center. Now that she wouldn't stand for. Not the regional center early intervention program. But I was insistent. Julianna would be fine now, she's walking. She doesn't have autism, like you told me. So please terminate all services.

And so began the phase I like to call "denial." I had somehow pushed all my fears to the farthest corner of my mind, and decided to completely deny the fact that anything was wrong. Even reading back in my journal, all I can find are positive, happy things that we did as a family. Not once did I ever talk about my worries or concerns. But I wasn't thinking rationally, at all. I pretty much just fired all the wonderful people who were working with my daughter, all because I thought I knew better than them, and didn't want to believe there was anything more to work on with her. Now those of you with children on the spectrum know how precious this help is to your child. It's life-saving, crucial, and completely necessary. And I had just turned them away, after all they had done. I truly didn't want to believe anything could be wrong with Julianna, that she needed any help at all. It was easier that way, better that way.

And so she turned two, continued improving in speech and other areas, but those behaviors were still there. They would go away soon enough, I rationalized. Besides, she played okay with the other kids. And she knew how to feed herself. But she did need help in many gross motor areas, and fine motor, too. I still remember after she had mastered walking, how scared she was to step off a curb, even holding my hand. She would not put her foot forward. Instead, she would turn all the way around, and back both feet off the curb with her hands on the ground. And she liked to put EVERYTHING in her mouth, still, at 2.

When she was 27 months I discovered I was pregnant with Blake. Julianna liked to touch my tummy and say, baby. And like any mom would, I wanted to potty train her before the next baby came. So at 2 1/2, I got all the gear, had a plan, and went for it. My first attempt ever at potty training. I don't even know if she had all the readiness signs, I just tried it because that's what you do with a 2 1/2 year old who's about to have a new baby brother. It was a complete failure. She wanted nothing to do with it, and even became so constipated that we had to take her to the doctor. From this one potty training attempt, she became completely fearful of the toilet, and we had to put her on laxatives to keep her regular. But still, I brushed this off, saying that she just wasn't ready, and we'd try again later. And soon after that came the tantrums, and the hand biting, new behaviors of which I had no idea to help her or console her. Things were getting better in some areas, but worse in others.

Blake was born in November, just before she turned 3. And when Blake was born with his own set of challenges of a completely new and different sort, I just kept right on denying with Julianna. I couldn't do both at once. I now had a baby with medical issues to care for. But lest you worry that I'm a horrible, neglectful parent, know that Julianna of course was loved, and played with, and cared for in the best way I knew how to at the time. However, denial can only last for so long. I reached a point where you can't hide those fears forever, can't deny what's right in front of you. And so began the next phase....

Julianna, Part 1: The "Fear" Phase

When I think about what I have been through in Julianna's 10 years of life so far, there are definitely stages that I can identify. If I were to sum up the first stage, or first couple of years of her life, I would call it "The Fear Phase." I was filled with so much fear during that time...fear about why she had these little behaviors, fear about why she wasn't progressing like she should, fear of what all her symptoms could mean.

I knew that her arm flapping, head shaking, and her little way of wiggling her arms and feet and clenching her jaw weren't normal, but I wanted to pretend they were. I wanted to keep waiting, just a little longer, because I kept trusting that she would grow out of these behaviors, and to keep those little feelings I had in the back of my mind, for as long as I could. The truth is, I didn't want to face it. I didn't even want to consider the possibility of something being wrong, because I was afraid. Afraid to know what it might be. Afraid of what it might mean for her future. Afraid that it she might have some serious condition that couldn't be fixed. Fear clouded my desire to seek out answers.

For my very first post, I have decided to share something I wrote in my journal way back on May 15, 2005. Julianna was only 17 months old; I was 23. I think it speaks volumes about how my journey began. (And please keep in mind, this is how I felt at that age. My views have certainly changed since then. But when it's all new, this is how it feels, at least how it did to me.)

"On Friday, my neighbor below knocked on my door and said she needed to talk to me. She said that Julianna has some autistic tendencies--flapping her arms, shaking her head, and repetitive mouth sounds. I was shocked, to say the least. I told her that Julianna is very social, can say at least 6 words, is very loving, and that I would never have suspected autism. She works with 3-year-old autistic children so she is familiar with their behaviors. Before she left, I couldn't hold back the tears, and she just hugged me and said, I don't know for sure, it's still very early to tell. I told her I'm glad she told me anyway.

After she left, the tears kept coming, and I held Julianna. I couldn't contact Joel at all that day because he was at Lagoon, so I called my mom. She said that just a few days ago, she was researching autism because she also suspected it. I couldn't believe it! She found this test called CHAT that they give to 18-month-olds. So she asked me the questions, and Julianna passed them all, except for one, but that doesn't even qualify her to be at risk. This was very reassuring, but I knew the only way I could truly be comforted was to pray. So after I put Julianna down, I prayed, earnestly, for comfort. And it worked! I wanted comfort because there's no way I can know for sure if she's autistic--she's too young. So, instead of driving myself crazy for 6 months, I needed to take this worry from my mind. And through prayer and the Holy Ghost, this was possible. I am so grateful for that.

I then researched autism online, and the more I read, the more comfort I received. Sure, she flaps her arm and shakes her head, but she's very smart. At this point, I really think she is just fine, and will grow out of these behaviors. But I will also keep a close eye on her and do things to keep her engaged and learning.

The Holy Spirit reaffirms to me, again and again, that she's fine. Even when I get a thought that maybe she could have autism, the spirit comforts me. I am now very educated about autism--which is good because if Julianna stops talking or just regresses, I know something might be wrong. I am also having her doctor observe her just to be sure. The spirit is wonderful, but I need all the assurance I can get right now."

This moment in my life is seared into my memory. I remember opening the door to my neighbor, inviting her in, and sitting on that couch, crying, as she tried to console me. I can only imagine how difficult it must have been for my neighbor to tell me what she thought. Without her courage and boldness, and specific educational knowledge, I am certain that I would have waited much longer to look into anything. This mother used her intuition to open my eyes, to start to face my fears, and I will forever be grateful for that.

She soon began physical therapy after this, because she wasn't walking at this age. I wasn't afraid of physical therapy--I knew she needed it, and her doctors insisted on it, so this was the first step I took on her journey, the first fear I would face. She began crawling around 12 months, sitting up at 9 months, both at the very end of the curve for development, but it was almost like she was scared to walk. I can vividly remember "tricking" her into taking steps. I would hold both her hands, then place a toy in one of her hands, then the other, and she'd be left standing there, holding both toys. I then would back up and beckon her to me, and instead of trying, it was like she was frozen in fear, and she would cry out for help. It was so puzzling. Here's what I wrote about my first visit with the PT:

"She determined that Julianna has low muscle tone in her thighs, which might keep her from walking. So she showed us some leg exercises we can do to strengthen her muscles. I also asked about autism, and she said she's worked with many autistic babies, and that Julianna does not have it! She said the arm flapping might just be a sensory thing that she'll grow out of. It was so nice to hear her say that! Now I hardly worry about it."

This first visit with the PT definitely calmed my fears a little bit, hearing a professional say she did not think Julianna had autism, so I tried hard to believe that she just needed help walking. After a few months of physical therapy, Julianna finally began to walk at 20 months. This therapy was provided by our local regional center, and they also sent a "teacher" to work on other areas of development with her. Before I knew it I had two people coming to my apartment, working with her. I suddenly began to feel like my daughter was needing too much help. I didn't want her to need so much help. I knew that something wasn't quite right, that I didn't have all the pieces to solve the puzzle yet, but all the specialists coming over made me feel like my daughter wasn't going to be okay. And I really felt like she would, I wanted so much for her to be fine. I wasn't ready to face the fears and the questions yet. So before she turned two I made one of the biggest mistakes I've ever made as a parent and regretted it for years to come......

Big Surprise at the ENT (Ear, Nose, Throat) for Nathan

Sometimes life throws you a little curve ball, just a little one. But enough to make you rethink a lot of things, and realize your priorities once again. Nathan is certainly my most unique child...born with a cleft palate, but no cleft lip, which usually happens only in girls. Then we find out he has the Chromosome 22 microduplication which so far they think is not affecting his development (though I am still extra watchful considering what I've gone through with Julianna). Then after his surgery, he is in the 1% of babies that ends up with a hole, or fistula, that might need repairing in the future (not the near future, something we are still celebrating!)

But there's one more thing I haven't really talked about, something that I didn't think would ever become a problem, and that's his Eustachian tubes, or ear tubes, that were placed at the same time as his palate repair back in August. Very routine procedure, for many children. And we were told the tubes would remain in place for about 6-18 months, at which point they would determine if he needed another set placed. The tubes were not even a concern, until yesterday, when he went to the ENT for an easy follow-up. One of those appointments where you think they're just going to look in the ears and everything would be fine. Well, it wasn't.

The ENT always asks about his speech development before she looks in the ears. Last time I was in, his speech was coming along nicely, and the hearing test confirmed everything looked great. That was 4 months ago. Right after he turned 13 months, he began saying words, and imitating sounds that I would say to him. He was picking up so many that I began a list, which I've kept on my fridge. The list is dated January 8th, and by the end of January, I had at least 15-20 words that he could say or imitate. I was so pleased with his progress.

But then suddenly, it seemed like he wasn't saying all those words as much as he used to. And when I would try to get him to mimic my words or sounds, he didn't want, or even try to. I wasn't super concerned, but became more watchful. And what I noticed is that in the months of February and March, I didn't add one single word to the list. In fact, I began looking at that list and circling the ones he still knew. But again, I rationalized by saying he was still just 15 months, and that the language would come. He still knew at least 5 words.

So I told all of this to the ENT, and she looked a little worried. She asked if he was getting speech therapy, and I told her no, not for forming language, but only for feeding issues. So first she ordered speech therapy sessions, because she thinks every child with cleft palate should receive it. And then she looked in his ears, and announced to us that BOTH tubes were no longer in place, and that one ear had fluid building up. His tubes didn't even stay in place for 6 months! She explained that his decrease in language was most likely a result of the tubes falling out, and that he hasn't been hearing properly for a few months now. And that his tubes needed to be placed again, and right away.

Wow, we sure weren't expecting this at a little follow up appointment. Made me so glad that I don't take follow ups lightly--I could have gone months longer and his speech would have become even more delayed. And the great thing is this doctor takes speech development so seriously that we are already scheduled for April 15 to have it done--not even two weeks away. But it is another surgery, where he will be in an outpatient area and be put under anesthesia to have the procedure done. We were told the process is pretty quick and we will be going in in the morning, leaving in the afternoon. So it's much easier than the first one, of course, but it's just another thing we have to arrange, get ready, etc. It wasn't in our plans, but I think what I have discovered with Nathan is he does things his own way! He defies the odds, and definitely keeps us on our toes.

Guest Post on World Autism Day: Deegan

I am so excited to be sharing today's post in honor of World Autism Day! Julianna has been fortunate to grow up with some amazing kids, one of which you will learn from today. She went to preschool with this fantastic little boy, so we have seen him grow up into the great kid he is now. What I love about Deegan is that plays extremely well with my son Blake (especially Mario Kart), and he can always make my little guy Nathan smile. Read on to learn about Deegan, sharing his own perspective on living with autism! If you or anyone you know would like to post on this blog, email thespecialreds@hotmail.com.

 

My name is Angel and I am so lucky to be the mother of a child with autism.  Deegan was diagnosed with moderate autism when he was 2 ½ years old.  He is now 9 years old and attends a regular 4th grade class with no aide and no IEP!  He doesn’t remember standing off in a corner and not playing with anyone.  But he sure remembers lining up his toys and not knowing how else to play with them.  Long gone are the days when he couldn’t answer a question or know I had a name (mom).  And I definitely do not miss the breaking glass or poking people in the eyes days!  He has come such a long way and because he is so smart and able to communicate so well, he wants EVERYONE to know what it is like for people with autism and that just because they may act a certain way, they are not trying to be bad or disrespectful.  They are listening when you think they are not.  And they feel connections to you even when their bodies cannot communicate it.

 

Here are 8 things Deegan wants everyone to know about Autism, written by Deegan:

1.  I have a lot of energy and I need to move my body all of the time.

2. I always think that people (especially my family) can read my mind and know what I need. I  forget to ask for help when I need it.

3. Thinking makes my body move a lot because I feel weird.  Like when I think about what it would be like to have another body, I have to squeeze my hands or run to get the thoughts out.  I also squeeze my hands when I get excited.

4. Math is really easy for me.  It just makes sense.

5. It’s hard for me to look people in the eye when they talk to me because there are so many other interesting things to look at.

6. People with autism have the most love.  We feel more love in our hearts than other people.

7. It’s really hard for me to eat new foods because it smells gross.  It’s also hard to eat around other people because they are gross when they eat.

8.  I am super good at remembering things, especially if I see a picture of it.  I can remember almost every picture I see and so it is easier for me to learn with pictures than by listening.