Autism Awareness: A Personal Story

autism

Meet Shannon. She lives in Pennsylvania, and she is a wonderful photographer, wife, daughter, and friend. She is also a rockstar mom to a beautiful little boy named Chase. She is joining us here on Mom365 today during Autism Awareness Month to share her story of her son’s struggles with autism and how it has affected her family.  Thank you Shannon for taking the time to shed some insight on this disorder to our community.

Shannon: Chase was born with a Spontaneous Pneumothorax, which is basically a hole in his lungs that was caused during labor. He was admitted into NICU at St. Joseph Medical Center, and was on oxygen and antibiotics for the duration of his stay there. I was discharged before him and just couldn’t wait for the day when we could take him home. A few days later we were handed our little one and told that he was healthy.

For the next couple of weeks we were overly cautious. Limited visitors and only took him out for doctor appointments. When Chase was six weeks old he developed a rash. We were told it was an allergic reaction to something and were sent home. We knew something was not right. We made several doctors visits because it was only getting worse. After three days of having the rash he was rushed to John Hopkins. It turned out he had an infection that was assumed to be something that he caught in NICU, had laid dormant and came out several weeks later. He was covered head to toe in a rash, his skin began to peel and his eyes were swollen shut. Despite all of this he was still a very good baby and brought us smiles every day even though we were fighting the tears. The doctors weren’t sure exactly what type of infection it was–possibly a staph infection–therefore he spent a week in the hospital on four different antibiotics. After he was discharged Chase was a healthy happy baby!

Gina: How old was your son when you found out he had autism? How old is he now?

Shannon: At the age of one, we noticed he was not developing as he should. Just after turning one, we noticed that he was still not speaking at all and his fine motor skills were not where they should have been. He wasn’t making much eye contact and when you called his name, even several times, he wouldn’t respond. We called the county and he began the Infants and Toddler Program in Baltimore County, Maryland when he was 14 months old. After several long months still no words were spoken.

In October 2012, just after turning 2, Chase was still not making any progress. We had Chase evaluated at Kennedy Krieger. At that time he was diagnosed with Pervasive Developmental Disorder, otherwise known as PDD-NOS on the Autism Spectrum. Immediately we began our research and learned everything we could to help him. Chase continued with his speech therapy in Baltimore County, but still no progress was made.

He was by this time using the sign for more and the sign for help which helped us a bit with communication.

Then in February of 2013, Chase had a follow up evaluation at Kennedy Krieger. This time they found him to be severely speech delayed and were told that he was not on the spectrum and to continue speech therapy and enroll him in a typical school.  Therefore, that is what we did. He seemed to love his new school and was excited to go each day. Even though he was making progress socially, he was still not speaking.

Our worries began to increase and in August of 2013, he had two evaluations performed, one with Kennedy Krieger and the other with the Infants and Toddler Program of PA. He was diagnosed with Encephalopathy, Autism Spectrum Disorder and Mixed Receptive-Expressive Language Disorder as well as Sensory Processing Disorder. They also said he was non-verbal and to not get our hopes up for him to ever speak, and if so that it would be very minimum.

Gina: Were there any warning signs of autism that you noticed before his diagnosis? If so, what were they?

Shannon: For us the largest sign was him not speaking at all–not even saying “mommy” or “daddy.” He had little to no eye contact, wouldn’t respond to his name, and would flap his arms a lot. He would also grunt…almost an angry grunt…a lot. He had no interest in interacting with his peers and hated interrupted play or adult-directed activity. He wanted to play alone all the time. I remember him being at parties and all the children playing, and he would be in the corner on his own, or we would have to sit in a different room away from everyone. He also was very “organized” for a toddler. He was put all of his things in different places, and they could not be moved. He would line up his toys or put them into a pattern. He would organize Chris’s (my husband’s) shoes in the closet in a certain pattern. We had to read the same books every night.  If we told him we were going to his Grammy’s house and we would go a different way he would be so upset. Everything had to be organized and lined up and familiar. Change was so hard for him.

His appetite was also a factor. Up until he was two he would eat everything we ate. I made all of his baby food homemade, and he would eat exactly what we ate most of the time. Then it was like one day a switch went off, and he stopped eating. He would only eat a handful of things. He completely stopped eating fruits and veggies which were the majority of his meals…no meat, no potatoes, or pasta or mac-and-cheese. We couldn’t get him to eat anything beside one brand of apple sauce. It was the only one he would eat aside from blueberry baby yogurt . We quickly became aware that you couldn’t feed him something that was a different brand, he would only drink certain juice boxes…two to be exact. If you poured a different juice in his cup he would know. He inspected everything we gave him.

The main three signs for us were no speech, little to no eye contact and not responding to his name.

GinaWhat were the feelings and emotions you had when learning of his diagnosis?

Shannon: The first time he was diagnosed, I can still remember that day…it was raining and Chris pulled the car up to the hospital doors. We got in and I just looked at him, put my head in his lap and started crying…uncontrollably crying. All I could think was that it wasn’t fair, he had been through so much already with his birth and then at John Hopkins. We could have lost him when he was six weeks old.  We made it through that and thought the worst was behind us. He is such an amazing little boy, and it wasn’t fair. I was so angry!

Most of all though I was thinking about all the “what ifs” and his future. It was like the second they told me his diagnosis, they proceeded to tell me be prepared for him to never speak, amongst other things.  They sent me out the door holding my perfect baby with now an unknown future and a brochure on Autism Spectrum Disorder. It was in those moments that I thought about everything…what if he never speaks, what if he doesn’t want to ever be affectionate anymore, what if he can never go to school without an aide or a typical school at all, what if he doesn’t have any friends, ever play sports, isn’t able to drive or live on his own. All of these things that you just assume will happen when you have a child were now swirling around my head as completely unknowns.

What bothered me the most was not knowing.

It was such a roller coaster back and forth with the diagnoses , and I think that the last time hit me much harder then the first time. I’m not sure why, but it did. I thought we were past something, and now the future looked different and as if it was taken away all over again. I was even more upset because of the time we wasted not having him in therapy and where he needed to be. I felt as if we were starting over but now a year behind of where we could have been. At this time he had just turned 3.

Gina: How did you cope with these feelings?

Shannon: I started to shut out friends and family, and stayed to myself as much as possible. As ridiculous as it sounds I got tired of people saying “I understand” or asking how I was.  I know they only meant well and they love me but I was in a dark place. I just kept thinking “they don’t understand…I know they want to and they try but they don’t.” When they would ask how I was, I would I think of everything positive that is going on, because no matter what kind of day I had there was always something positive I could find even if it was just a cute look Chase gave me.  But the truth was when someone asked me “How are you?” I felt like screaming, “Do you really want to know?!?! I’m not ok. I’m worried. I’m sick to my stomach every day trying to learn to care for my child in the proper way and give him what he needs while trying to except that he may never speak!”  Anyway, it was really bad. Chris and I began shutting each other out too.  Mostly because if we talked about it, we would cry. We didn’t like to cry, so we just didn’t talk about it.  He would say “Everything will be ok. Take one day at a time,”  and I said “I know.”

“God only gives special kids to special people.” This was something I heard often as well. I would say “Thank you,” and walk away. For some reason, that saying would always leave me with such mixed emotion. I don’t think that we are special. I think we fight for our child and do everything we can for him. I think we are the lucky ones because Chase is such a blessing.

The first time Chase was diagnosed, I began to read articles, call doctors, look for therapies, and read books.  I thought the more I knew the better I could help Chase.  I felt as if I shut every part of my life out and I only had two things to do which were to educate myself and to help him, to fight for him.  I quickly learned that doctors, schools and therapist aren’t going to fight for your child, you have to do it and you know what’s best.  So we fought.  We fight everyday!

As time went on,  I opened up to family, I began to speak more openly about it, and I went to a little bit of therapy. The more that others heard about Chase, the more support we were able to get.  I was able to meet other moms with children the same age as Chase and others older. I was able to get other perspectives on it.  I didn’t feel so alone.  Eventually I had a few concerned parents contacting me asking me what the signs were and where to go that they were worried about their child.  Keeping it inside only made things worse and the moment I began to open up the better things became.

Gina: What are the biggest challenges for your son in regard to having autism?

Shannon: He faces challenges everyday. The biggest challenge by far is communication.  He can communicate with us the best because we are in tune to his wants and needs.  Peers, teachers, and other family and and friends are not, so communication is really hard. His teacher told me the other day she knows he is trying to communicate but she just can’t understand him and feels so bad.  Most children are amazing with Chase but it’s still a struggle because even when he tries to speak, it is just mumbling.  Some times he uses tapping or gentle pushing or pulling as a form of communication and other children think he is being aggressive.

He can’t tell me when he is sick, or when something is wrong, or something hurts. I have to rely on mother instincts and sometimes they are on point and other days I struggle a lot.

Gina: Does he participate in any treatment or therapies? What is that like for him on a daily or weekly basis?

Shannon: Finding treatment for Chase was the most difficult and frustrating. If I had time I would fight for a better system for parents and children. Maybe one day.  Baltimore County only offered one program, and it was awful. I cried sending him, and he cried. We have been on a waitlist for Kennedy Krieger for speech and OT since 2013.  We have had six evaluations there, but never any treatment or therapy.

We found a school in PA that offered a special needs program at the local elementary school 3 days a week. My brother at a time bought a house two minutes from this school and decided to put it up for rent, so we moved from our MD home and rented it. We took a leap in hopes for better education for him, and it was worth it. The program is amazing and he can continue that through next year.  He has had the same classroom and therapist there since day one which is great because stability and routine is so important.

April of last year, we bought a home of our own in PA making this a permanent move based on Chase’s education. In June, his special needs school suggested we put Chase in a typical pre-school for socialization purposes. So we enrolled in a private school a few minutes from our home.

In July, I came across an amazing place called Leg Up Farm in PA. I immediately called, we went for a tour and then were put on a waitlist. In late September, Chase began therapy there as well.

So a typical week for Chase since September….

Monday – Typical Preschool from 9-11:30am then 12:30-2pm Occupational Therapy at Rebounders which is a gymnastics place in MD, but they have a special needs program. We sought this out on our own in April last year feeling that Chase needed more.

Tuesday – Therapy day at Leg up Farm starting at 12pm. Speech, Feeding, Equine on his horse, Clover, which he loves, and then OT.

Wednesday – Typical Preschool: 9-11:30am and then Special Needs School: 12:30-3:30pm.

Thursday – Morning Playing with Mommy and Special Needs School: 12:30 – 3:30pm.

Friday – Typical Preschool: 9-11:30am and Special Needs School: 12:30-3:30pm.

Saturday and Sunday – we are home, usually relaxing or doing something fun, but we did create as our summer project last year a room that was his learning and art room. It has a map of the United States which he knows almost all of now, a chalkboard, easel, art table and tons of books! We do exercises and art projects and flash cards and lots of reading with him. We even do feeding therapy at home as well.

Gina: Have you seen progress in his development since treatment or therapy? If so, in what way?

Shannon: Oh my gosh yes, and it is such a blessing!  I feel like each month there is something big he has accomplished.  Just the other day, he said “I love you” to my husband.  I cried…happy tears of course.  He walked across a balance beam without needing help, which is huge.  The smallest things right now are the biggest victories for us, and we celebrate and thank God for everyone. With every little accomplishment there is hope and excitement.

His fine motor skills are getting better. He can hold a crayon and draw a circle. He can unscrew a lid to a jar. His gross motor skills are improving as well. He can now walk on a balance beam, he can take his coat off, put his shoes on, he can jump and open and close his legs. I know it doesn’t sound like much but these are things he couldn’t do before and now can.

He rides his horse…with assistance but he talks to her…gives her commands such as “walk on” “whoa” “trot.”  He brushes and feeds her.  It’s really an amazing things to watch.

He is speaking. It’s not much and most of it is prompted, but he is saying words here and there.

Feeding is the only thing that isn’t going well.  It’s so hard!

Gina: What is the best way to support a child with autism?

Shannon: Whether you are the child’s parent, a friend, or family member, I feel that the biggest thing is understanding. Put yourself in their world and be patient.  Being patient and understanding are huge. Chase thinks differently. You need to think how he thinks so you can see where he is coming from…so you can better help him.  I have tried to always be prepared for what is ahead on any given day…to learn what triggers him and what relaxes him.  Learning to calm them is so important.  Chase has huge meltdowns sometimes and I have found things that work and things that definitely do not.  I usually sit on the floor, hold him and count or sign to him. He likes “Baby Mine” — the song from dumbo. Motion is really important along with calming and soothing.

Make sure they are getting the help they need. Find a program that fits their needs. It’s hard. For us, it was really hard, but we found amazing ones and couldn’t be happier.

GinaWhat is the best way to support a parent of a child with autism?

Shannon: We have been blessed with organizations donating to the cost of Chase’s therapies at Leg Up. Financial donations are great, but emotional support is needed the most.

When Chase was first diagnosed our families didn’t agree with the diagnoses, friends didn’t understand what things were like for us, and Chris and I were both in a little denial. We have the largest support system anyone could ask for.  We have friends and family that show up for everything for him and those that are always there for me to lean on, to cry to or to just be there when I am having a bad day. I don’t believe anyone that isn’t in our situation can truly understand, but they try and that means the world!  They try to play with Chase and interact with him. They try to get on his level, and they are supportive of us.  It’s important for me to have people that I can call when the day is rough, or when an evaluation was bad, or I’m just having a bad moment. I’m blessed that I do!  Just be there for the parents…their child is going through this and it’s hard, but it’s even harder on the parents watching their child go through it.

GinaWhat have you found to be the most common misconceptions about autism?

Shannon: That everyone with autism is the same. Most people generalize it. They think all people with autism have these characteristics and behave a certain way. The autism spectrum is just that…a spectrum. If you have met one child with autism you have met one child with autism. Just like every child is different, so is every autistic child. Not everyone with Autism is non-verbal. Not everyone with autism is lining things up. It’s different for everyone.

Chase is an amazing child!  I am so very blessed to be able to be his mother each day!  He is my everything, and we will continue to do whatever it takes for him to succeed!  Just love your child for who they are.  You didn’t choose this, but they didn’t either. So be there for them, do something fun with them everyday, and never ever let anyone set limitations for your child.  Chase has already proven doctors wrong.  Also, don’t avoid things because you think you child can’t handle it.  At first I would jump to the conclusion that he couldn’t do something or that he would cry or be upset, but it turns out I have been wrong. I would never have imagined he would love roller coasters, but he does. He loves boats and amusement parks.  Who would have thought? Think outside the box, and come up with activities they like that also promote socialization, gross motor skills or fine motor skills.  Chase loves dance class and gymnastics.  He is also starting T-ball next week and Chris is coaching, ,so we will see.

It gets easier! I promise. The more you have a routine and your child is where he/she needs to be, things get a bit easier.  Every day will still offer challenges and I’m lying if I say I don’t break down every now and then. I do. And I still do a lot after playdates with my friends and their typical children. It’s so hard watching your child struggling to socialize and be a part of things.

Additional Resources:

Books:

HOPE by Lynda T. Young

The Out of Sync Child Has Fun by Carol Stock Kranowitz

The Spark by Kristine Barnett


Autism Speaks 

Real Housewives – Jacqueline Laurita