A Stylish Closet

April, 2018

For more than a decade, April 2nd has held a special place in my heart. This date back in 2007 was named by the United Nations, National Autism Awareness Day. As many of you may know, just days after my youngest son Logan’s second birthday, he was diagnosed with Autism.  I can not even begin to describe the feelings I felt as a child Psychologist sat across from me and my husband and delivered this news. Questions quickly began to run through my mind. What do we do now? Will he ever learn to talk? Will he make friends? Will he ever be able to attend “typical” school? Will he ever be able to date, drive, live alone? These questions and so many more were at the forefront of my mind.  The worst part was, here was a two year old boy who we had so many hopes and dreams for, and in a matter of minutes, those hopes and dreams began to change.

Before I continue on with my personal story of Autism, I’d like to give a brief summary with early warning signs of Autism.

Autism, or Autism Spectrum Disorder (ASD) is a developmental disorder that brings challenges associated with social skills, speech, repetitive behaviors, and nonverbal communication. Autism is a spectrum disorder, meaning that each person with Autism is different and has their own unique and special challenges.

SIGNS OF AUTISM:

Autism’s most obvious signs tend to be noticed around the ages of two or three, with some being noticed even as early as 18 months.  This was the case with my son. Here are 10 early warning signs to watch for:

1. No big smiles or other joyful expressions when approached by caregivers.
2. No back and forth sharing of sounds, smiles or other facial expressions (imitations).
3. No babbling noises by 12 months.
4. No gestures by the age of 12 months such as pointing, waving, reaching, or showing.
5. No words by 16 months of age.
6. Loss of language or social skills at any age (this was our big indicator).
7. Not responding to their name when called. (Another of our indicators)
8. No meaningful 2 word phrases (not including repeating or immitating) by 24 months.
9. Avoiding eye contact.
10. Does not seek your attention.

Your pediatrician should administer the M-CHAT (Modified Checklist for Autism in Toddlers) around 16-18 months.  The M-CHAT is a series of questions that can help your pediatrician determine if your child could be at risk for Autism.  This simple questionnaire is available online and only takes a few minutes to complete. Please make sure this is being done at your child’s 18 month checkup.  It was the M-CHAT, my own concerns, and a very astute pediatrician that helped us get Logan the early intervention he needed.

Speaking of early intervention, it is critical! If you even slightly suspect your child could have Autism, do not delay in getting him or her evaluated. The sooner you can get a diagnosis and your child into early intervention, the better the child’s chances are of progressing, developing, and improving.

OUR STORY:

On December 9, 2005, we had our third baby, a boy, whom we named Logan. He was 7 pounds 11 ounces, and perfect in everyway. As time went on, development seemed to follow that of our other two children.  He seemed to smile, look at us, and even made noises. He crawled and even learned to walk at the normal milestone ages. Words began to come and started to increase at a rapid pace, and then as if overnight, at around 17 months, every word in his vocabulary was gone except the word “mama.”  Everything and everyone was “mama.” I began to wonder if he had a hearing problem because I could stand right next to him, call his name, and he would never acknowledge me. If he wanted something, instead of pointing to his toy, or binky, or book, he would grab my hand and use it as a means to show me what he wanted.  I began to worry.  This was completely different than what my two older kids had done. My degree is in Family and Human Development, and so I knew the stages of development, and began to realize that he was behind.  It was at his 18 month checkup that I brought up my concerns to our Pediatrician.  She immediately asked me some questions, which I found out at the end was the M-CHAT test. She asked me, have you ever wondered about Autism? I told her it had crossed my mind, but I wasn’t even 100 percent sure what Autism was.  She told me it would be best to get Logan in to see a specialist and have him evaluated.  She let me know the waiting lists were long, as there were not many specialists who were trained in diagnosing Autism.  I went home, called my husband, and cried. Things like this happen to other people, not to me and my child. I called every child psychologist that was referred to me by the pediatrician, and sure enough, every single one had a waitlist of 8-12 months. I was devastated. Everything I was reading said early intervention was essential, and the sooner we could actually find out if he had Autism the better. But now I was left waiting and wondering.

On December 5, 2007, I received a phone call from the University of Utah’s Neurobehavioral Clinic. The lady on the phone let me know they had a cancellation for the next day, and wondered if I’d like the appointment.  I immediately said yes. She told me to be there at 9:00 with $1,000 cash (at this time, Autism was not covered at all by insurance) and a list of ages at which milestones had been hit. I was nervous, relieved, and anxious for this appointment.

The appointment lasted all day. My husband, Logan, and I met with the psychologist and her aide. While one would talk with us, the other would be engaging with and evaluating Logan. At what age did he first smile? How old was he when he started to babble? Was he born early? Were there any complications in your pregnancy and delivery? At what age did he crawl? At what age did he start eating by himself? At what age did he walk? At what age did he roll over? How many words do you think were in his vocabulary? One question after another for the entire day.

With Logan they would ask him to point, line up some blocks, play with cars, play peek a boo, blow out a pretend birthday candle, all things that broke my heart as I watched him not be able to accomplish these simple tasks. Notes were being taken, as well as a video recording. At the end of the session, we were told to meet back in a week, and she would let us know her diagnosis.

We left the appointment and in my heart, I knew what the outcome would be. Sure enough, one week later, we sat across from that child Psychologist as she delivered the news, she was diagnosing Logan with Autism. My heart broke. Even though I suspected the outcome, nothing is worse than sitting across from a professional doctor and having them tell you something is wrong with your child. Where do we go from here? Her answer- there are not a lot of places that offer early intervention here in Utah for kids with Autism. I could not believe this!  How is this possible? Then she let us know, that the places that did offer early intervention had 2 year waiting lists, were not covered by insurance, and were extremely expensive. We are talking more than sending a child to an Ivy League school at the time. She let us know there were 9 states in the nation where Autism was covered by insurance, and that we might want to consider moving, and then she pretty much sent us out the door.

Luckily for us, my husband’s best friend from childhood had a niece who had also been recently diagnosed with Autism and they recommended the Carmen B. Pingree School for Autism. So I made a phone call to the Pingree Center, and was told that the waiting list for the Pre-school early intervention was two years. If we waited those two years, the pre-school was free due to a grant, but they could only take a limited amount each year. We could pay out of pocket, and get in but the price was $29,000 a year. We did not have that kind of money, so I put Logan on the waiting list and began the wait. This same friend, let us know that one of the pre-school teachers from the Pingree Center did private home tutoring at nights and wondered if we would like her information. I jumped at this opportunity and gave her a call. Kathleen was a god-send! She came to our home and let us know she would love to tutor Logan starting right away. Because of her teaching degree, she charged a lot more an hour than her aides, and so she set us up with two of her aides as well.  She came 3 times a week and the aides each came twice a week.  At the age of two, Logan began receiving about 8-10 hours of early intervention a week.  The early intervention they use at the Pingree Center is known as ABA or Applied Behavior Analysis.

Fast forward about four months and Logan was speaking, he was making better eye contact, and was turning into a completely different child. It was an answer to prayers. This team of tutors worked with Logan for about a year and a half. Then the biggest miracle of them all, Logan got into Pingree the following Fall. I could not believe it. Everything was falling into place and I knew that my prayers were being answered.

First Day of School at The Pingree Center

Logan attended the Carmen B. Pingree School of Autism in the Fall of 2009. Because he is one of the oldest (his birthday being in December) we were excited because we knew he would get the full two years of pre-school there.  The Pingree School to this day is one of my most cherished memories.  Those teachers and aides have a love for these kiddos with Autism. They get them, they encourage them, and they see success in them that is unbelievable! At our parent teacher conference at the end of the year, Logan’s teacher let us know, that he had far surpassed their expectations and that they recommended sending him to a “typical” pre-school the following year. I couldn’t believe it. So, we did just that. For his four year old pre-school he attended a typical pre-school and did amazingly well.

Logan, age 8

Fast forward eight years. Logan is now twelve. He has attended typical, mainstream elementary school from Kindergarten to sixth grade.  He is the most social kid I know and has many friends. His vocabulary is beyond his years, he reads at an 8th grade level and is a pure genius at math. His eye contact can be a bit off at times, and sometimes he says things that may not be appropriate for the situation, but to me and everyone else, he seems just like any other typical 12 year old.

Why did I share this? Because I want to shed some light on Autism. It was a LONG and HARD road for our family.  Yes, the outcome is amazing, if not a miracle, but there were many, many, many days when my other kids had to be put on the back burner because I had to be with Logan at tutoring sessions, take him to school 25 miles away, and nap because the kid NEVER slept! I could never leave him alone in a room because he was an escape artist and I didn’t trust anyone to watch him except myself, my husband, or my mom. Family relationships began to strengthen, and some began to suffer as many didn’t know how to handle the situation.  Friends began to slowly fall away and at times, (more than I can count) I felt depressed, alone, and completely distraught. People at the grocery store or church would say things that left me in awe and made me feel inadequate as a parent. But when I look back, I realize we were all hanging on by a thread and doing the very best we could.

Family Vacation, Paris 2017

If you feel that your child could possibly be on the Autism spectrum, please follow our lead, and get your child evaluated. There is no risk if you find out everything is okay, but if you wait too long for an evaluation, you could miss those early, essential, critical years of early intervention. Please feel free to reach out to me.  I’d love to hear your story, offer support, lend a listening ear, or share with you what we have learned on our Autism journey.

Autism Awareness Night at the Utah Jazz Game, 2017

FACTS ABOUT AUTISM:

1. Autism affects 1 in 68 children. 1 in every 42 boys. By comparison, this is more children than are affected by diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or Down syndrome – combined.
2. Autism figures are growing.
3. Autism is one of the fastest growing developmental disorders in the USA.
4. Autism costs the family on average, $60,000 a year.
5. Boys are nearly 5 times more likely than girls to be diagnosed with Autism.
6. There is no medical detection or cure for Autism.
7. About 40% of children with Autism do not speak.
8. Autism greatly varies from person to person.
9. Early Intervention is key for children with Autism.

HELPFUL LINKS:

Carmen B. Pingree Center for Autism

Autism Speaks

The Autism Society

Amsterdam, Summer 2017